We originally created this blog to keep family and friends updated about our little man Jacob, who was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick (type A/B). Jacob earned his angel wings on November 15, 2012, but remains our daily inspiration and constant reminder that we must live in the moment and fill each day with JOY, LAUGHTER and an abundance of LOVE.

Saturday, December 15, 2012

So, this is Christmas?

Today marks exactly one month since Jacob passed away. It has been an extremely difficult and emotional month for us, especially today. We took time earlier today to go visit Jake and brought a Christmas tree to Queen of Heaven Cemetery (innocents area), which we decorated specially for him. It was one small way that we could celebrate with Jake even though he's no longer here with us. We also welcome any family and friends to visit Jake and add an ornament to his tree.

A special tree for Jacob
The perfect ornament for a perfect boy

While everyone else seems to be busy with holiday preparations, we're trying to get into the spirit, but it's just not the same without Jake. Holidays really are incredibly difficult when you're forced to celebrate without the one(s) you love most. I never really noticed until now, but even Christmas music is harsh reminder of the reality that the holidays just aren't the same...."they're singing deck the halls, but it's not like Christmas at all" and "I'll have a blue Christmas without you, I'll be so blue just thinking about you." For now, we're trying our best and even took the time to decorate a tree at our home, so that Kelly could have a special first Christmas.

In my mind and in my heart, I know that Jake is watching over us. Earlier this week I had a particularly rough day and was missing Jake a lot. Just when I was reaching into my purse for some tissue, I found a small jingle bell. I have absolutely no idea how it could have gotten into my purse since I haven't been out of the house much since Kelly was born and we hadn't yet pulled out our Christmas decorations. I know many people look for signs after the passing of their loved ones and we've seen several, most of which we have not really shared. That jingle bell was something special that I needed in that very moment.

This was the first ornament that we hung on our tree at home. It's an angel from Jake's godparents that says "Forever Our Angel Jakey Boy" 

Friday, December 7, 2012

A Little Joy in Our Lives

On Monday night, we welcomed our baby girl into this world. Meet Kelly Joy Brooks, our (not-so-little) 8 lb 14 oz and 21 3/4 inch long cutie. If you were wondering about how we came up with the name, Kelly is my maiden name and Joy...well, we wanted to somehow incorporate Jacob into the life of his new baby sister and being that December is the season of  'Joy' it seemed perfectly fitting. Although we are so heartbroken that Jake did not get the chance to meet his baby sister, we know that she will always have a very special angel watching over her.

Little miss Kelly Joy Brooks and her cute little footprints.
It has been an incredibly emotional past few weeks for our family, met with both excitement for the arrival of Kelly and extreme sadness over the passing of Jacob. We made sure that Jake was watching over us all during Kelly's birth, as we both wore our persevere wristbands and angel necklaces, which were given to us after Jake passed. The angels are carved from Jerusalem stone and have a matching piece that we each placed with Jacob. We kept the other pieces for ourselves so that we can always keep Jake close to our hearts.

Brooks Family

Amazing photo that Grandpa Paul took. If you notice, Josh is wearing his angel necklace.
As we're settling in at home and getting used to our new routine (hmmm...what routine is there really with a newborn!?!), we're reminded of Jake constantly. Every little thing Kelly does we are comparing to Jake and often find ourselves saying Jake's name in place of Kelly's. I actually had a pretty emotional time at the doctor's office this morning when I tried to check in for Kelly's first appointment and found myself checking in for Jacob. We have been to so many medical appointments for Jacob over the last two years and it's just going to take us time to adjust. I don't honestly know how you "adjust" to losing a child, but for now we're just taking things a day at a time, just like we did after receiving Jake's diagnosis. We want Kelly to know how very special Jacob was to us and we are going to use all the wonderful lessons Jacob taught us to make Kelly feel just as loved as her big brother.
On our first night home with Kelly we read her one of Jake's favorite books - On The Night You Were Born

Friday, November 30, 2012

End of Movember

Movember and the Mo Bros 4 Jacob site started off as one of the most original fundraiser ideas, but little could we have known that it would spur the most incredible showing of love and support for Jacob. Outside of the Mo Bros 4 Jacob Facebook page, we have received so many texts and e-mails from people (and pets) with some pretty crazy mustaches. You all helped bring lots of good laughs when we needed them most!

November is going to forever be a very difficult month for our family because we lost the most special little boy. There is no way that anybody could have predicted that Jake would earn his angel wings during the very same month that people were proudly supporting the Movember cause, but in a strange way we found some level of comfort in seeing so many people who were so actively involved in sharing Jacob's story of perseverance and their support for our family (even if it was in the form of a mustache).

We are using the funds that we have raised over the past couple months to help with Jacob's funeral expenses and will be donating the remainder to the National Niemann-Pick Disease Foundation in memory of Jacob.

Here's a sampling of what we've seen this past month:
Mo Firemen for Jacob

Mo Bros for Jacob

More Mo Bros for Jacob

UPS Mo Bro for Jacob

Grandpa Mo Bros for Jacob

Mini-Mo Bros for Jacob

Mo Sistas for Jacob

Mo Mommas and Daughters for Jacob

Another Mo Momma and mini-Mo Sistas for Jacob
Mini-Mo Sistas for Jacob

Personal fave...Mo Auntie and not yet born baby cousin Mo Sista for Jacob

Mo Great-Grandma for Jacob

Mo Family Photo for Jacob

Mo Group Shot (plus dog) for Jacob

Mo Pets for Jacob
And finally, Josh sporting his Mo Daddy mustache all month long for his best little buddy

Monday, November 26, 2012

Joy of Jacob Memory Video

We wanted to share the special Joy of Jacob Memory Video that was played at Jacob's Celebration of Life service last week. Click here to view Jacob's video or click directly on the video below.

A special thank you to Jake's Auntie Kate who helped us put this beautiful video together, so that we could share a little bit of the joy that Jacob brought into our lives with others and always be able to look back on all the wonderful memories we have. This video is a true treasure that we'll be able to have forever. Godspeed little man. Mommy & Daddy miss you so very much!

Thursday, November 22, 2012


On behalf of Josh and I, as well as both of our entire families, we want to thank everyone who came out to celebrate Jacob's life with us on Tuesday. It was an absolutely amazing celebration for our little man and we are honored to have shared this day with the more than 350+ people in attendance, as well as those of you who sent wishes from afar. Each one of you helped make an incredibly difficult day, so very special -- a wonderful tribute for our Jacob.

The cover of Jake's Celebration of Life program. Special thanks to Ann Luke for her design expertise and tireless hours spent at our home working with us to create the most perfect program.

We also want to thank everyone who has sent meals, beautiful flowers, cards and other thoughtful gifts. Even more so, thank you for everyone who is sending in donations to the National Niemann-Pick Foundation in memory of Jacob. We are hopeful that one day there will be a cure for this devastating disease, so that other families will not have to endure such a profound loss in their lives. Josh and I are overwhelmed by the amount of love and support that we have received.

One of the many flower arrangements sent for our little angel boy

Being that today is Thanksgiving, I think it's appropriate that we also share what we are most thankful for. Josh and I are thankful for...

  • Every moment that we got to spend with our sweet little man Jacob. He has been a true blessing in our lives and we're so proud that he made such a difference in the lives of others. We miss him SO MUCH!
  • Our incredible family and amazing friends, who have loved us and supported us in every way possible.
  • Our soon-to-be-born baby girl who will bring so much joy back into our lives.

    Part of the memory table for Jacob, which was filled with all of his favorite things
We hope that Jacob's life lessons will serve as a constant reminder of what is truly important in life -- Love and Family -- these are the things to be most thankful for!

Wednesday, November 21, 2012

Jacob's Obituary

Jacob's obituary ran in the Contra Costa Times yesterday. A friend of Jacob's Grammie Kathy who works for the paper added a special angel at the very end, so very fitting being that Jacob is a very special angel.
Jacob Lee Brooks

Resident of Martinez

September 20, 2010 – November 15, 2012

Jacob Lee Brooks earned his angel wings on Thursday, as he passed away very peacefully in his home while being held in the arms of his parents. Jacob was diagnosed in the summer of 2011 with a rare, life-limiting genetic disease called Niemann-Pick. He was one of only three children in the US currently living with Niemann-Pick Disease, Type A.  Jake was just two-years old (not quite 26 months), but despite his short time on earth he touched the lives and hearts of so many.

Jacob loved being snuggled and reading books with his parents. His favorite bedtime friends were his stuffed elephant “Ele” and his glo worm. He loved going on adventures with his family, including camping, going to the beach and trips to the zoo. When he was able, he loved to play peek-a-boo, while kicking his feet with laughter and excitement.

Although the disease restricted his body, his life and joyful spirit had an immense impact on those who knew him. Even complete strangers who followed his blog joyofjacob.blogspot.com were inspired by his life story. Jacob was a true blessing and inspired others to live their lives more fully with joy, laughter and an abundance of love! Jacob will be incredibly missed and there will always be a piece missing in our family, but he will remain in our hearts forever.

Jacob is survived by his parents; Josh & Sarah (Kelly) Brooks, as well as his soon-to-be born baby sister. His paternal grandparents; Paul & Sheila (Strand) Cotruvo of Pleasant Hill, CA and Glenn “Beaver” Brooks Jr. of Concord, CA.  His maternal grandparents; Dennis & Kathy Kelly of Martinez, CA. Aunts and Uncles; Hope Brooks, Todd Maselli, Glenn & Madea Brooks, Jeff & Liberty Dimick, Kate Cotruvo, Daniel Kelly, Joe & Jenée Kelly, and Kenny Kelly. Jacob is also survived by his beloved cousins; Hailey Maselli, Justin, Kayla and Abigail Brooks, Miller Dimick, and Alexis Kelly; as well as many loving extended family members.

A Celebration of Life service will be held on Tuesday, November 20, 2012, 10:30 AM, at the Hope Center, 2275 Morello Avenue, Pleasant Hill, CA. A private graveside burial will be held at Queen of Heaven Cemetery in Lafayette. Please join us as we celebrate the life of the strongest and most inspiring little man, our sweet angel Jacob.

In lieu of flowers, please consider making a donation in Jacob’s name to the National Niemann-Pick Disease Foundation (for type A) at NNPDF, PO Box 310 Fort Atkinson, WI 53538 or visit www.nnpdf.org.

Saturday, November 17, 2012

A Celebration of Jacob's Life

Please join us as we celebrate the life of the strongest and most inspiring little man, our sweet angel Jacob.

Tuesday, November 20th, 2012

Celebration of Life Memorial -- 10:30 am

Hope Center
2275 Morello Avenue
Pleasant Hill, CA 94523
* Corner of Taylor Blvd. and Morello Ave.
(925) 685-4673

All family and friends are welcome. Reception immediately following at the same location.

Private Graveside Burial - Time to be determined 
Family only

Queen of Heaven Cemetery - Holy Innocents area
1965 Reliez Valley Road
Lafayette, CA 94549

In lieu of flowers, please consider making a donation to the National Niemann-Pick Disease Foundation in memory of Jacob Lee Brooks.  Click here to donate.

Friday, November 16, 2012

Our Little Angel Boy

Our little man Jacob earned his angel wings earlier this morning, November, 15th at 10:40 a.m. Jake passed away very peacefully in my arms while Josh gently held his hand. We are overcome with both extreme sadness for the loss of our amazing little boy; yet somehow, we are comforted in knowing that Jake is no longer suffering from the horrible disease that deprived him of the chance to live a truly full life. That is not to say that our little man was not fully LOVED -- Jacob was loved more fully than any other person we have ever met.

As sad as it is to lose someone you love SO VERY MUCH, it was an incredibly peaceful and loving experience. We spent the last few days snuggled up close to Jake in his bed as countless family members and friends came by our home to love on our little man. We listened to all of the songs that we played in the delivery room when Jake was born, read him his favorite stories, and told him that we loved him more than anything in the entire world! Last night our family gathered in his room while Jake's grandpa Paul played some of Jake's favorite songs, including "Here Comes the Sun". Jake loved music! Throughout the entire process, we kept Jake completely comfortable and free of pain. Jacob is so incredibly tough, that he waited until every little part of his tiny body was worn out so that he could gather every last kiss and cuddle that he possible could. Even in his final moments with us, we got to snuggle him in our arms and hold his hands. We couldn't have asked for a better way to send off our little man to a place where we know he will be free from the pain and restrictions that he was so unfairly given in his life here on earth.

Holding cousin Hailey's hand while she read a story to him

Snuggled up with Momma and his favorite stuffed animal Ele

Holding Daddy's hand

Grandpa Dennis gave this rosary to Jake prior to our gathering for his last rites and his cousin Casey made sure he had his PERSEVERE wrist band. Jake held on to these items for most of the day

It is impossible to describe what a wonderful blessing Jake was in our lives. Jacob was a true JOY from the moment he was born up until the moment he took his very last breath. Our hearts are broken and even though Jacob will remain forever in our hearts, we know that there will always be a giant piece missing. It is simply impossible to fill the empty space in our hearts that Jacob filled.

Jake was just two-years old (not quite 26 months), but regardless of the length of Jake's life here on earth, we can without a doubt say that our little man touched the lives and hearts of so, so many. As I signed on to the blog this evening, I was amazed to see that Jacob's blog has received 3,300+ views in the last few days...so incredibly touching! We have received countless messages and texts from people over the last few days, which is a true testament to the insurmountable love and support for our little man Jake from across the globe. As his parents, we hope that sharing Jake's story has inspired others to live their lives more fully with joy, laughter and an abundance of love!

"Even the smallest of feet have the power to leave everlasting footprints upon this world"

We love you with all of our hearts Jacob Lee Brooks!!!!

Monday, November 12, 2012

Too Much, Too Soon

Where do I start...

Let's start with some good news! First off, Jake's new seizure medication is working! We haven't seen a seizure in 2 weeks! Secondly, my maternity has officially started and I can now be at home full-time with our little man. Josh and I have juggled our schedules for more than a year to accommodate being home with Jacob, but his care needs have gotten to be too much. It was becoming much more difficult to juggle work and caring for Jake, especially when all I want to do is be home with my little man.

Now, for the not-so-good news -- oh heck, I'm not going to sugar coat it; the news is not good at all!!

We've seen a lot of changes over the last few days and we're trying our best to keep up. Jake's disease has progressed significantly over the last few months, but the changes we've seen over the last few days have been drastic and happened virtually overnight. On Thursday evening, Jake began having a very difficult time breathing and I had to put him on oxygen. When Josh came home from work, he was caught off guard to see him on oxygen since he had been fine earlier in the day. That same evening he woke up from his sleep several times pretty agitated, so I administered his first dose of Ativan to help alleviate his distress. We know he is experiencing a great deal of discomfort and pain from his enlarged organs because he now cries most of the time when he is awake. The ativan helped a little, but it didn't help much.

As of Friday, Jake is now on oxygen around the clock. His breathing has gotten so bad that he often gasps for air despite being on 4 liters of oxygen. We began giving Jake morphine to help with the shortness of breath and to better treat his pain. The morphine has helped tremendously, but he now sleeps pretty much all day long. At least now, he is feeling comfortable.

Jacob is no longer able to consume any sort of nutrition orally -- not even a bottle, which used to provide him so much comfort. The risk of aspiration is too high even to give him sips of water, so we're using little pink sponge toothettes to moisten his mouth.  Being on oxygen has really dried out his mouth, so we're being diligent about keeping his lips moistened and I even bought him some strawberry flavored lip smackers to add a bit of flavor. He really likes it when I apply anything to his lips, so I know it must feel so soothing to him.

The feeding changes, addition of new medicines and overall slowing of his digestive system are causing Jake to have constipation, which only adds to his discomfort. We've replace his bolus feeding with prune juice to and are administering via g-tube...thank goodness, because we tried it and it's GROSS!

As if this weren't enough, we've also been battling a really red g-tube site caused by leakage around his g-tube. The last thing Jake needs is an infection! We've significantly reduced his overnight feed amount to help alleviate leakage from the site since his body seems to be digesting more slowly. Hospice advised us that his full tummy combined with his enlarged organs are likely exacerbating the situation by constricting his lungs, hence the difficulty breathing.

We had hospice come over earlier today and we received confirmation of our worst fear...Jake's little body is shutting down. Although it is something we knew to expect with Jake's disease, we did not expect it to happen now. This is all just too much and definitely too soon. The timing couldn't be worse as we anticipate the arrival of our baby girl any day now. How do you simultaneously prepare for one of the best days and the worst days of your life???

Please send Jacob and our family all the good thoughts, well-wishes and prayers you can -- especially comfort to Jake, as well as strength for Josh and I, as we deal with this most incredibly difficult time in our lives.

Jake is still enjoying his balloons : )

Monday, November 5, 2012

Donation Match!!

Just had to share some good news...we got a great big surprise last week when we received a check for the the National Niemann-Pick Disease Foundation (NNPDF) in the amount of $1,255 -- compliments of Premier Designs, Inc. As you may recall, we held a jewelry fundraiser over the summer and came to find out that it was the company's highest grossing home party in the month of July! Our amazing friend (and jewelry consultant) Sue Brown went above and beyond as we worked together to write a letter to Premier Designs about Niemann-Pick Disease and to tell Jacob's story. Long story short...they matched the 25% fundraiser amount that Sue originally donated to split between Jacob and the NNPDF, so that we could make an even more significant contribution to the NNPDF! The check went out in the mail today!! Yay!!!

I should also mention another special tie to the NNPDF. As part of our jewelry fundraiser, Jake's grandma Sheila picked us out some beautiful matching "Love Cuff" bracelets, which feature the words "Love is patient, Love is Kind. It always protects, always trusts, always hopes, always perseveres. Love never fails." I couldn't believe it when she gifted the bracelet to me because those same words were part of Josh and my wedding vows, but more importantly, the term "PERSEVERE" is the motto for the NNPDF and serves as a daily affirmation for our family. So incredibly perfect! We wear our bracelets often as a reminder of our love for Jacob.

Another BIG THANK YOU to Sue for all of your wonderful efforts to support a cause very near to our hearts and for helping to share Jake's story, as well as spread awareness about Niemann-Pick Disease.

Jacob sitting with Sue and eyeing that big donation check being sent to the NNPDF!

Thursday, November 1, 2012

It's a bird! It's a plane! It's Superman!!

Of course, we knew that we'd have to find something extra special and comfy for Jacob's 3rd Halloween, but quite honestly, I don't think we could have picked a better costume. Every boy wants to be a superhero, but our little man really is a SUPERHERO!!

It's a bird! It's a plane! It's SUPER JAKE!!!

We didn't go trick-or-treating, but we did have lots of fun visiting with family and a couple of Jake's little cousins in their cute costumes! Here are a few pics:

Hanging out with a skeleton (Auntie Libby) and the cutest little bumble bee (cousin Millie)

Yes, that's a SMILE!!! We haven't seen many smiles lately, so this was a special Halloween TREAT!

70's funk guy (Daddy), Superman, Frankenstein (cousin Cash) and Alfredo (as himself)

Momma and her little Superman

Monday, October 29, 2012


Nope…there’s no typo in this blog title. The month of November is being appropriately renamed as “Movember” thanks to Jake’s Uncle Jeff and his firefighter buddies who came up with a fun way to help raise money for Jacob – grow a mustache for the entire month of November. The rules are quite simple and might I add…very entertaining.
Josh will also be growing (or at least attempting to grow) a stache along with everyone else who is helping to support Jacob and raising awareness. In fact, Josh has been rather excited about Movember since he is obsessed with mustaches, even though he much prefers the look of the fake stick on ones.
Please visit the Mo Bros 4 Jacob Facebook page for more details and to share in the mustache growing fun. You can also review the official rules below.
Anyone interested in growing a sweet stache for Movember or supporting someone who does can visit the Support a Mo Bro 4 Jacob FundRazr site to make a mustache growing pledge or sponsor someone who is growing one.
 Rules to become a Mo Bros or Mo Sista:
1) Pledge a minimum $5 to Register using the link on this page: Mo Bros 4 Jacob

2) Agree to grow a Stache for the entire month of Movember.....no shaving a week in no matter how creepy you may look. Mo Sistas agree to supporting their man in his Stache growing efforts by telling him on a daily basis how manly his Soup Strainer makes him look.

3) Seek out sponsorship for your Mo-growing effort from friends and family, using your Lip Rug as a walking, talking billboard for the next 30 days of November to spread Jacob’s story
4) Groom, trim, and wax your Mouth Brow, following these guidelines to having a true Mo:
 a.) There is to be no joining of the Mo to side burns – that’s a beard!
 b.) There is to be no joining of the handlebars – that’s a goatee!
 c.) A small complimentary growth under the bottom lip is allowed
5) Post pictures of your Mo growing adventures as often as possible
6) Final and most important rule: Each Mo Bro must conduct himself like a true gentleman

If Jake can grow a stache...so can you!!!

Did we mention Josh's obsession with fake mustaches?? Jakers has been subjected to many different styles : )

Please post pictures to the Facebook page throughout the month and/or send pics to sarahpbrooks@aol.com, as we can’t wait to see all the friendly faces of those supporting our little man Jake.

Monday, October 22, 2012


This past week has been a pretty emotional one for Josh and I, as we've made the extremely difficult decision to start Jacob on hospice care and focus on palliative care -- keeping him comfortable and as pain free as possible. We have mixed emotions about this decision and to be completely honest, I have been pretty much overcome with the sad realization that comes with this unfamiliar territory. Before Jake's diagnosis, hospice care is simply not anything that Josh and I ever imagined we would have to consider for our child.

When we met with Jake's pediatrician last month for his regular 2-year check-up, we had the uncomfortable conversation about considering do not resuscitate (DNR) orders in the event that Jacob were to have another serious hospitalization, as he did earlier this year when he had RSV. This was not the first time that we have had discussions surrounding this topic, but I think it was truly the first time we let it sink in because we knew in our hearts the timing was appropriate. Josh and I had another discussion with Jake's neurologist just last week, which pretty much solidified the need to engage hospice in Jake's on-going care. I was an emotional wreck when I left that appointment and have been pretty teary for the last few days. Even the littlest things have set me off, including a little boy who was wearing a spider man mask at the grocery store, which sent me into tears. For those who know me well, you know that I'm not one to share such personal feelings so freely. I am sharing this information so that we don't have to continue to share it over and over again, as this is just a lot for us to come to grips with at the moment.

We have seen quite a bit of progression in Jake's disease over the last month or so. Despite starting Jake on Keppra (anti-seizure medicine), his seizures have worsened. Jake now has 3+ seizures a day and they've increased in severity. We have been working with his neurologist to evaluate the situation and even got blood work done to see if perhaps his body was having trouble metabolizing the medication -- either too fast or too slow. The blood work revealed normal levels of medication, but it did indicate his platelets are low. The low platelet count could be attributed his enlarged spleen, which may be harboring too many platelets or it may be due to his seizure medicine. We suspect the enlarged spleen to be the cause. That being said, we started Jake on a new anti-seizure medicine called Phenobarbital and are working to wean him off the Keppra. It's still too early to tell, but we feel it may be helping to decrease the number of seizures a day.  In the meantime, we will check his platelet count again this week.

In addition to his seizures, Jake has also lost virtually all control of his arm movements. The hand tremors that began over the summer have progressed into spastic movements in his arms and he can no longer control the way his arms move. He has also lost the ability to hold his head upright, so we have to be very careful in supporting his head. This progression is all relative to neurological progression of the disease. It has also become apparent that Jake is often uncomfortable when we try to carry him around and he has become increasingly irritable. Overall, there have been a lot of changes in a short amount of time. All these things combined, have lead us to the decision that we know is best for Jacob, which is to focus on comfort care and keep him as pain free as possible. We met with Angel's Hospice yesterday and Jacob will now have weekly in-home visits by a nurse who will help monitor his care. Josh and I have always felt very strongly that we want to focus on quality of life for Jacob. Right now, we're focusing on maintaining as much normalcy as possible, but understanding his limits and helping to keep him comfortable. We are trying our best to be as selfless as possible during this process because it will allow us to do what's best for Jake.

Wednesday, October 17, 2012

Niemann-Pick Awareness Month

Did you know that October is National Niemann-Pick Awareness month? Niemann-Pick is a disease that we (like most people) had never even heard of before Jacob was diagnosed with it over a year ago, yet now we are forever affected by this devastating disease. It breaks our hearts to see the progressive decline in health that our sweet boy is experiencing and to know that there is no cure (yet) for this horrible, horrible disease.

Read about Jake's Diagnosis

It’s often difficult to put into words how we are feeling and we struggle with understanding what life lessons are meant to be learned through this experience. Most importantly, we have learned that every day matters and we try to enjoy every moment...every kiss, snuggle, and smile!
Loving and caring for our little man Jacob continues to be our number one priority, but as time goes by, we have an urgent need to spread awareness. By raising awareness for NPD, Josh and I feel that we CAN do something to support a cause that is very near and dear to our hearts. With the help of our family, friends and even complete strangers, we can raise awareness for a rare disease that affects the lives of precious young children and the hearts of so many!! It simply is not fair for a child to have to suffer so greatly. We want to share the Joy of Jacob with anyone who will listen. Jacob is meant to make a difference in his lifetime!

This year marks 20 years that the National Niemann-Pick Disease Foundation (NNPDF) has been providing services to families affected by NPD, and raising awareness and funding for research into the causes and treatment of NPD.  We first connected with the NNPDF mere days after receiving Jake’s diagnosis and they have been a tremendous support for our family. In fact, they helped connect us with the leading specialist for Niemann-Pick Disease at Mount Sinai in New York, as well as provided us a forum (via Facebook) to reach out to other families affected by this rare disease. We are forever grateful to have access to an organization that is solely dedicated to promoting research for NPD and supporting families affected by this disease. With the help of family and friends, as well as our own personal contributions, we have helped raise more than $1,000 in donations for the NNPDF in the last couple months. Every little bit helps other families affected by this devastating disease and brings us that much closer to a cure.  

To learn more about Niemann-Pick Disease visit the National Niemann-Pick Disease Foundation website. Feel free to share this blog post and help us PERSEVERE and raise awareness!

We've been told that there won't likely be a cure for NPD in Jacob's lifetime, but that doesn't stop us from trying!

Tuesday, October 9, 2012

You Brighten The World!

Jacob received a gift the other day that is just too special not to share. A good friend of mine works at a daycare and had given me a heads up that she'd been working on a special "project" for the little man. Well, over the weekend Jake got a special package delivered in the mail and when we opened it...boy, oh boy, were we impressed!

The package contained two brand new books, which Jacob loves! It also had a bunch of hand-made cards and pictures, which were so sweetly designed with drawings of all of Jake's favorite things: elephants, monkeys, books, cookie monster, trees, and even his Momma. Our most favorite part of the package was a beautiful banner with the words, "Jacob Lee - You Brighten the World". How sweet is that!?! Each of the kids signed the banner and posed with it, so they could send us a pic along with the package filled with love and support. We really enjoyed showing Jake each picture and his face lit up as he looked at all the awesome artwork!

A small sampling of some of the artwork
Thank you so much Robyn and the Dalala Crew for such a special and thoughtful gift!

All the little artists who sent their love and support for Jake

Friday, October 5, 2012

Full Tummies & Happy Hearts

We are once again completely overwhelmed by all the love and support that we continue to receive for our little man Jacob. Yesterday, one of our local restaurants Smokey D's hosted an all-day fundraiser and 20% of all meal tabs are being given to Jake to benefit his ongoing medical expenses.To say our fundraiser was a success, is truly an understatement. Smokey D's was completely inundated with phone orders and lines of customers out the door. In fact, by 12:30 we got a call from the owner telling us that they had to close the doors because they were running out of food and had a 1 1/2 hour backlog of phone orders! Needless to say, they spent the mid-afternoon calling in extra staff and getting more food for the dinner crowd, which showed up with a great big appetite! Again, there were countless family members, friends, and local community members who came out to support our fundraiser, which meant lines out the door for hours and slim pickens' on what food was left by the end of the night. We are still in disbelief about the number of people who came out to support Jake.

Despite a couple of seizures earlier in the day, Jacob was in great mood and joined in on the fun! We sat out on the patio listening to the live music and mingling with everyone who showed up, as well as thanking them for their support. I can't tell you how much it means to us to have this immense amount of love and support for our family. The financial support is something that we are beyond grateful for, but it's the well wishes, kind words of encouragement, and hugs that mean more to us than you will ever know! The fact that our little man is making his mark on the hearts of so many, truly makes our hearts happy.

The outdoor patio was packed!

Our favorite parts of the day:
  • Getting the call at lunch that lines were out the door!Yahoo!!
  • Josh and Jaker's grandpas (Beaver, Dennis, and Paul) sang/played a special 'Heart of Gold' song for Jacob
  • Grandpa Paul played Jake's favorite song 'Here Comes the Sun'
  • Recieving e-mails from complete strangers who had heard about the fundraiser and visited Jake's blog...we're RAISING AWARENESS!!! We also had information about Niemann-Pick at the event.
Special thanks to Dave Huitt (Smokey D's owner) and his incredible staff for their tireless efforts to keep the BBQ a cookin' and filling the tummies of all that showed up to support Jake. I heard rave reviews about the delicious food!

Thank you to all of the talented local musicians who graced us with the amazing gifts of music: Paul Cotruvo, Tony Bryant, Larry Hall, Jim Caroompas, and Hope Savage. That patio was a ROCKIN'!

Larry, Toni and Paul playing out on the patio

This little cutie even got up and sang a song - so sweet!

Thank you! Thank you! Thank you...to all of you who dined-in, ordered take-out, and sent donations even if you couldn't make it.