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