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.

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.