Brennan the Brave Fights Tay-Sachs Disease (Brennan Stringer)

Brennan the Brave Fights Tay-Sachs Disease

For: Brennan Stringer
Organizer: Raquel Parker (Brennan's Aunt)
Brennan the Brave Fights Tay-Sachs Disease (Brennan Stringer)
$14,130
of $25,000 goal
56% Complete
A Message from Brennan's Parents:

Brennan Stringer was born July 21, 2012.  He was born seemingly healthy, clocking in at 8 lbs. 11 oz.  As most babies, Brennan had his little quirks like acid reflux but nothing out of the ordinary.  It wasn't until about 6 months of age that we started to notice a difference in Brennan's development.  He had quickly learned how to sit up, but came to a screeching halt after that.  And as we would watch the next 6 months unfold, his development would drastically decline.

By Brennan's 9th month, he had begun to lose his ability to sit up, roll over and hold his bottle.  Brennan’s older brother, Karson, met all of these milestones on time only three short years before Brennan.  So we were all too familiar with the "growth and development" chart that is typically followed.  We called in our State Early Intervention and quickly got him started in therapy.  After evaluating Brennan, they felt that he had low tone in his body, and after some hard work in therapy, he would begin to get back on track.  At first the therapy was proving itself.  Brennan's posture began to improve again.  He started to reach for toys and make eye contact.  He was, however, still struggling to eat by mouth.  He seemed to eat the pureed foods well, but couldn't take any solid bits without choking.  Our therapist told us that we should take him in for a swallow study to see what was happening inside.  We were completely unprepared for what was to come.

On a nice warm summer day, we took Brennan down to Phoenix Children's Hospital for his first swallow study.  We had the whole day planned… quick swallow test, a nice lunch and then shopping with the boys. It was about a week before Brennan's first birthday and we were preparing for a big celebration at home.  After the swallow study, the speech pathologist that performed the test took us in a small conference room to discuss their findings.  She said, "Do you know what aspiration means?" and then followed with, "Do you understand that you cannot safely feed your child?"  We just looked at each other in disbelief. How could this be?  We fed Brennan for the first year of his life with no problems. How could he be aspirating his food?  And so it began.  They admitted us to the hospital for an NG-Tube. 

They ran test after test on Brennan trying to find a cause for all of his low muscle tone.  Muscular tests, genetic testing, lab work was sent out looking for things like muscular dystrophy, spinal muscular atrophy, etc.  But they couldn't find an answer. 

We returned home scared and shaken, but celebrated Brennan's birthday with smiles.  Brennan could no longer sit, roll, sign, etc.  We quickly made tube feedings a part of our normal routine and continued in therapy with him.  After a few months, he started to "come back."  He was sitting a little, moving better and gaining weight nicely.  But while reading a bedtime story to the boys in September, Brennan began to have a seizure.  He had never had a seizure before.  We called 911 and had Brennan to our local hospital in a matter of minutes.  This seizure would not subside - it took over 30 minutes for them to stop it.  We were transported to Phoenix Children's Hospital and spent a week undergoing testing.  We were fortunate to have a great neurologist who was determined to find an answer.  He told us he would be testing us for some rare genetic disorders, like Krabbe's Disease.  He warned us that some of these diseases were bad and could be terminal.  Testing for some of these rare disorders can take weeks so the neurologist sent us home and told us that he would be in touch regarding the test results.

On September 24th, 2013, at 14 months of age, Brennan was diagnosed with Infantile Tay-Sachs Disease.  Our neurologist explained that such disease has been terminal in all children, with most children not living past the age of four.  There is currently no cure and little treatment.  We were glad to finally have an answer, but devastated by the diagnosis.  Brennan, whose name means "Brave", went from being a seemingly healthy little boy, sitting up and saying "Mamma," to being completely immobile and suffering from a life-threatening disease in only a matter of a few months.

However, we believe that there is something bigger than this disease and that is our mighty Lord in Heaven.  He is greater than any diagnosis, and he will have the final say.  God can do great things in tragedy and we pray for a miracle.  We know God has a plan for our little Brennan and we trust in Him.

- Holly and Royce Stringer (Brennan's parents)


We are humbly asking for help to provide Brennan with the necessary medical treatments, at-home equipment, therapy, and all other related medical and travel expenses along the way.  Unfortunately the family's insurance is not covering all of these expenses. We are also raising money for the whole family, Royce, Holly, Brennan and Karson, to attend the National Tay Sachs and Allied Diseases (NTSAD) Family Conference in Atlanta in April, 2014.  If an appropriate clinical trial becomes available for Brennan, we will also be seeking support for his participation.


- With love, Raquel (Brennan's Aunt)


For more information about Tay Sach's Disease, please visit: www.ntsad.org



Updates

02/05/2015
by Raquel Parker (Brennan's Aunt)
Update by: Royce and Holly Stringer

Recap of 2014

Thank you again for all of your love and support!  This past year was an adventurous one, full of ups and downs.  Here is a recap of 2014!

Thanks to all of your financial support, we were able to travel to Georgia for our first annual Tay-Sachs conference.  At the conference we were able to meet other parents and their children suffering from the same disease.  There are only a handful of children living in the United States with Tay-Sachs disease.  It was a great opportunity to learn more about Brennan's care and what to expect in his disease progression.  We were also able to meet with the top researchers and doctors who are working towards a treatment for Tay-Sachs.  Currently there is no cure and very little treatment options.  We did however, learn of a clinical trial being held at the University of Minnesota.  The trial involves the use of a medication that could potentially slow the progression of the disease.  
  In June we entered the clinical trial and traveled to Minneapolis, Minnesota.  Brennan spent several days at the hospital having tests done before we could start the new medication.  The trial has two parts, the first is a new diet called the Ketogenic Diet and the second is the medication.  The doctors in Minnesota felt that Brennan was a good candidate for the trial.  It wasn't all hospital 'stuff' though!  We took a few days and visited Mall of America and The Water Park of America!  It turned out to be one of the best times that we have ever spent together as a family! 
  We went back home to begin the new diet (which we needed to be on before he could start the clinical trial meds)  Unfortunately the diet didn't go as well as we had hoped.  Brennan is very sensitive and his stomach was not tolerating the new formula.  It took us most of the summer to work out the bugs.  We then started the new medication which needed to be added very slowly.  It took the remainder of the year to get Brennan on the full dose of his new medication. Brennan caught pneumonia twice in the fall, so that slowed things down also.  Fortunately we were able treat him from home both times.
2015 Has started out pretty good. Brennan has been healthy and he has even started moving his legs more!  He has been happy and has needed less seizure meds this past month.  He also got his new wheelchair which we have been waiting on for several months!  The next step will be getting a van that will accommodate Brennan and all his new gear.  As for the upcoming months, we plan to attend the Annual Tay-Sachs conference again this April which will be held in Reston, VA.  We also will be returning to Minnesota to follow up on the clinical trail.  Please keep Brennan and our family in prayer as we continue through this year.  Thank you so much again for your love and support!

06/13/2014
by Raquel Parker (Brennan's Aunt)
Update from: Holly Stringer

Thank you again for your continued prayers and support.  We are so thankful!  This next week will be traveling to Minneapolis, MN to enter Brennan into a clinical trial.  This is a two part clinical trial.  The first part involves putting Brennan on a special diet (the ketogenic diet) to potentially help minimize his seizures.  Although Brennan is G-tube fed, he still has trouble being introduced to new formulas.  Please keep him in your prayers that he will transition to the new formula smoothly and that the diet works well for him.  The second part of the trial involves a medication that we pray will slow down the progression of his disease.  Tay-Sachs disease is an extremely quick moving disease, which we have watched in Brennan.  We ask that you keep our family in your prayers as we travel to Minnesota and also for little Brennan that he would find some relief from this trial.  Thank you again to all of you who have given your time, finances and love to our little family.  We would not be able to involve Brennan in this trial or many other therapies without your support! Thank you!

04/24/2014
by Raquel Parker (Brennan's Aunt)
Update from: Holly Stringer (Brennan's Mother)

April has been a busy month for little Brennan.  We traveled to Atlanta, Georgia to attend the NTSAD Annual Family Conference.  This was an amazing opportunity for our family and I thank you all for your continued support and helping make this trip possible.  
At the conference we were able to meet other families with children affected by Tay-Sachs and also allied diseases.  Tears filled my eyes on the first day when we approached the first affected family.  I gave the mom a big hug and for the first time I felt like I had another Mom that really understood everything I was facing. And realizing that little Brennan was not the only child on the planet to be affected with this aweful disease.  Of course, I would never want any child to go through this.  But, it was so comforting to see these other families doing well as they walked the same path as us.  We made some amazing connections with these families, people we will never forget!
The other great part about this conference is the research information.  We got to sit down with all of the researchers and talk one-on-one with them.  We learned so much.  Currently there is no cure or gene therapy available.  However, they are closer than ever!  We were surprised to find out that the research is getting very close to a human trial for Gene Therapy.  Possibly even in 2015!  This Gene Therapy could quite possibly stop the progression of these terrible diseases!  They have been working succesfully in animals and are on the home-stretch.  Of course, they do have to present all of their information to the FDA and that could be a big road block.  Please keep these researchers in your prayers.  Pray that they take all of the right paths, in the right order and in the quickest amount of time.  We pray that Brennan will someday benefit from this treatment!
Though they did not have a take-home cure for us, we did find some great treatment options to help with Brennan's fight.  One of which is a clinical trial from the University of Minnesota.  We are hopeful that this two-part treatment will help minimize Brennan's seizures and also slow down his disease progression.  Please keep us in your thoughts and prayers as we embark on this next part of our journey.  We hope that we can get to Minnesota in the next few months and we will keep you all posted!  Thank you so very much! 

02/02/2014
by Raquel Parker (Brennan's Aunt)
From Brennan's parents:

RAFFLE WINNER...

We want to continue to thank all of you for your amazing donations.  We are so thankful for each and everyone of you!  We would also like to give special thanks to Kevin O'neill and his family for their efforts and the beautiful hand-made necklace that was raffled off.  With over 30 entries, the raffle generated close to $800 for Brennan's fundraiser!  Thank you all so much!

So we put all of the entries in a bowl and let Brennan pick a winner...

The winner of the onyx and opal necklace is Lori Cole from Tucson, AZ.  Thank you Lori!  And thank you to everyone else who donated!

02/02/2014
by Raquel Parker (Brennan's Aunt)
From Brennan's parents:

RAFFLE WINNER...

We want to continue to thank all of you for your amazing donations.  We are so thankful for each and everyone of you!  We would also like to give special thanks to Kevin O'neill and his family for their efforts and the beautiful hand-made necklace that was raffled off.  With over 30 entries, the raffle generated close to $800 for Brennan's fundraiser!  Thank you all so much!

So we put all of the entries in a bowl and let Brennan pick a winner...

The winner of the onyx and opal necklace is Lori Cole from Tucson, AZ.  Thank you Lori!  And thank you to everyone else who donated!

12/12/2013
by Raquel Parker (Brennan's Aunt)
Comment by Royce Stringer(Brennan's Father):
Thank you for your continued love, support and prayers. Brennan's surgery this Tuesday was a success and he is now home recovering well. We are so happy to see his beautiful face again without the tube hanging out of his nose. He is still a little sore but I think he is glad to have the NG Tube out as well and seems to be eating and swallowing better. However he has been a little jumpy and has had a hard time sleeping so please pray for him to find comfort. We are overwhelmed by all of your support and are on our way to meeting our fundraising goal. Thank you all again. 
-The Stringers

12/08/2013
by Raquel Parker (Brennan's Aunt)
From Brennan's Mother Holly Stringer:
I just wanted to take a moment to thank all of you who have so graciously given to support Brennan.  As his mother, I am just taken back at all of your donations, comments and prayers. Some of you have known our family for years, and some have never met us before.  The love and care that strangers are sharing for my little Brennan, I am truly humbled by.  You all are making a huge difference in our lives and I cannot thank you enough.  Because of the donations so far, we are able to attend the National Tay-Sachs Convention in April and I will be face to face with the leading researchers of this disease.  That means so much to me, and gives me some hope that they may have good news for by baby boy.  I don't know what they will have for us, if anything, but I know they are getting very close to a treatment.  
I do have one more request, that everyone would keep Brennan in prayer.  On tuesday, Brennan will be having surgery to place a G-Tube (a port in his stomach for food.)  The good news is we can finally rid of the tube in his nose! Yay Brennan! This will be more comfortable for Brennan and making feedings a bit easier on him.  I have been told that this is a quick and simple procedure, but it is still surgery and there are always risks.  We are praying for a smooth surgery and quick recovery!  Thank you all!

12/03/2013
by Raquel Parker (Brennan's Aunt)

What an amazing first day, over $2,500 in donations! Thank you all so much, we are so blessed to have amazing friends and family. There is a National Tay Sach's family conference next April in Atlanta and thanks to all your love and support we have already raised enough to purchase tickets to the event and airfare!!! We are looking forward to this event since Tay Sach's is so rare we probably wouldn't have a chance to connect with any other families affected if it weren't for this event. The event will also feature the latest news for finding a cure for Tay Sachs.

With continued support we are planning to buy Brennan a special needs stroller with shoulder straps for added support for his head and shoulders and start chipping away at medical bills. You guys are awesome, don't be afraid to give $5 or $10 if that's all you can give, it all adds up. If you can't give, please continue to share the link to help spread the word and raise awareness of Tay Sach's. 


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