Brennan the Brave's Fight Against Tay-Sachs Disease

For: Brennan Stringer
Arizona
Organizer: Raquel Parker (Brennan's Aunt)
$17,153
of $25,000 goal.
Raised by 215 donors
68% Complete
This fundraiser is closed. Thank you for your support!

The Story

Updated Message from Brennan's Parents:
Words cannot express what a privilege it was to be Brennan's parents. The Lord chose us to care for this precious child and now he is home. Brennan passed on March 4, 2016, in the comfort of his own home. It was fairly sudden and our hearts are broken. We will keep everyone posted as plans are made in the coming weeks. Thank you all for your support.

There will be additional medical invoices rolling in, in addition to the funeral expenses. A separate YouCaring page has been set up to assist with the funeral expenses, titled "Brennan Stringer Memorial Fund."

About Brennan:
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)


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

Fundraiser Updates

Posted on March 5, 2016

Posted on March 5, 2016

This evening, March 4, 2016, in the comfort of his home, Brennan the Brave earned his wings and went home with the Lord.  Thank you for your love and support during this difficult time.

Posted on January 29, 2016

Posted on January 29, 2016

On Wednesday, January 27th, after suffering from a common cold, Brennan began to have severely labored breathing, necessitating Brennan's parents, Royce and Holly, to take him to the local hospital.  They were quickly transported by air to Phoenix Children’s Hospital due to the severity of Brennan's condition. Upon arrival and admittance to the Pediatric Intensive Care Unit (PICU) at Phoenix Children's, and after some testing, the doctors confirmed that Brennan has pneumonia and Influenza Type A. As of the evening of January 28th, Brennan is receiving treatment for his Influenza and is on the BiPap machine to assist his breathing. The good news is he has not been intubated yet. In fact, Brennan’s doctors have said that considering he has Tay-Sachs, pneumonia and influenza, he is a rock-star and a fighter for doing so well (he is Brennan the Brave after all). However, we are no where near being out of the woods yet. The next 24-48 hours are crucial in determining whether Brennan will be able to breathe on his own, and ultimately go home with his family.

Many of you have generously asked where you can donate to Brennan's expenses.  Brennan’s family are experiencing immediate expenses associated with this unexpected hospital visit. They have been told that best case scenario, if Brennan improves over the next few days, he will be there for at least a week. This presents unexpected food and travel expenses in addition to the medical expenses.

They are also extremely hopeful they will be able to bring Brennan home and travel to the National Tay Sachs and Allied Diseases (NTSAD) Annual Family Conference in Orlando in April. The family has attended the past two years because of the generosity and support of family and friends. It is because of this Conference that they learned about alternative treatment options for Brennan and where they have developed a support system from other families enduring the same battle. It is because of your generosity thus far that they have been able to travel to Minnesota to start Brennan on the clinical trial they learned about at the Conference, and the clinical trial has drastically decreased Brennan's seizures.  Brennan even made the front page of last year's Conference webpage! (Go to: https://www.ntsad.org/index.php/event-listings/family-conference/2015-conference)

Above all, we ask for your continued prayers.  We cannot thank you enough.

Posted on February 6, 2015

Posted on February 6, 2015

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!

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