Brennan the Brave // Donation Raffle
Back in September of last year I had blogged
about some devastating news we received in our family. My nephew, Brennan Stringer (at the time only 14 months old), was diagnosed with Infantile Tay Sachs
, which is a rare genetic disorder that currently has no known cure or treatment.
Everyday I think about this little man and my heart just breaks. Whenever that whining, “woe is me” attitude creeps into my mind, because of whatever challenge I may be currently experiencing (health, financial, etc), I immediately see little Brennan’s face in my mind and am reminded of what a blessing the air in my lungs is. Everyday I think about my sister Holly and can’t even begin to imagine the pain she is dealing with.
Many of you have asked me how you can help the Stringer family in this difficult time and I am so thankful for your generosity. In a few weeks I will be announcing a charity quilt project which will support families currently affected by Tay-Sach’s (and other allied diseases).
Right now, I wanted to share an opportunity to support the Stringer family specifically. They have a long road ahead. Brennan is going to need medical treatments, at-home equipment, therapy, and they will encounter other related medical and travel expenses along the way. Unfortunately, the family's insurance is not covering all of these expenses. It’s absolutely crazy how quickly medical expenses can add up.
An online You Caring donation account has been setup for the Stringer family. It’s simple and secure to donate. Just go to Brennan the Brave’s profile page and click on the "Give" button.
Your donation will be processed through PayPal or WePay and the funds will be forwarded to the Stringers’ account without delay. No fee is charged by You Caring, but a minimal credit card processing fee is deducted from the amount you donate. So, nearly every dollar you donate will go directly to the Stringers.
Holly’s close friend and co-worker, Kevin O'Neill, is an award winning Jewelry Designer who creates one-of-a-kind inlay pieces known as Intarsia. Kevin has made a heart pendant inlaid with onyx and Australian opal, set in 14kt. white gold with a .03 ct. diamond on top (retail value for this pendant is $1,195.00.). Kevin is raffling this beautiful pendant off for Brennan’s cause.
Donate a minimum of $20 to have your name entered in the raffle. For every $20 you donate your name will be entered for a chance to win this beautiful pendant. (Example: $100 donation = Your name entered in the drawing 5 times).
Simply click on "Give Now" at the official donation website, and once you enter the amount you wish to donate... in the "Leave a Message" section make sure to include the word "RAFFLE" to be entered for your chance to win. For anonymous donors who wish to participate in the raffle please include initials. A winner will be drawn on Friday January 31, 2014 and announced on this Facebook page.
A Letter from Holly & Royce Stringer (Brennan’s Parents)
Brennan Stringer was born July 21, 2012. He was born seemingly healthy, clocking in at 8 lbs. 11 oz. As with 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 team and quickly got him started in therapy. After evaluating Brennan, they felt that he had low muscle 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 who 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 at 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 and 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 this 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
You can learn more about Tay-Sach’s and the other Allied Diseases at ntsad.org, but I will also post more information in a few weeks on what Tay-Sach’s is as well as information on how you can support other families, like the Stringers, affected by the disease through a charity quilt program.
Thank you all for your love and support!