Sunday, August 28, 2016
Supporting Brody (a young parishioner)
Brody's story began something like this......Every parents dream, just giving birth to your beautiful healthy baby boy and having your eldest son melt when meeting him. Hearts full of love, joy and emotion as Tara and Jeremy looked at their boys and imagined the future of their perfect family of four.
This was the case for the Meadys until Brody's first appointment after leaving the hospital. A disease called Adrenoleukodystrophy (ALD) crept into their lives and tore apart their dreams of watching their perfect healthy boys grow. The doctor noted that this test came back positive on Brody's newborn screening. Now this was only a screening- there could be a chance of a false positive. But it would take weeks before they knew for sure. Even big brother Finn needed to have blood drawn. Tara's and Jeremy's lives became a whirlwind of uncertainty. Statistics and information were thrown at them every other second. "What do you mean our beautiful, perfect boy can be taken from us?" Doctors appointments, lab tests, IV infusions have become the norm for poor Brody-- and he is barely two months. Tears and fear have become the norm for Tara and Jeremy because with ALD you don't know what type or severity until symptoms develop. After weeks of testing and waiting, anxiety, tears and fear, the tests came back. Finn, their handsome 2 1/2 year old was healthy (additional confirmatory test spending). But Brody's tests were positive for ALD. The most common symptoms begin around ages 4-10 and are usually behavioral changes. Other symptoms include visual loss, seizures, deafness, disturbances of balance and coordination, and progressive dementia- to name a few. Can you imagine having to wait for symptoms to appear?
The state of Connecticut just began testing newborns for ALD as a part of the newborn screening in October 2015, thanks to Jean Kelley from Branford, CT. Jean's son was diagnosed later in life and this makes managing the disease much more difficult. Early diagnosis and intervention are paramount to beating this disease. Brody is only the second child in CT to be diagnosed with ALD on newborn screening.
Brody and his family are in for a long life of tests after tests and traveling to various places to see experts, such as Boston and Minnesota for the very best, top notch treatments for precious Brody.
Brody's adrenal function must be tested periodically and treatments with hormones can be lifesaving. As of right now there is no cure for ALD. But there is a lot of symptomatic support including for physical therapy, psychological support, and special education. Recent evidence suggests that a treatment with certain oils and acids can prevent or delay the appearance of the disease. Bone marrow transplantations can provide long-term benefit to boys who have early evidence of the childhood cerebral form of ALD, but the procedure carries risks as well.
Prognosis for patients with childhood cerebral ALD is generally poor unless bone marrow transplantation is performed early. Death usually occurs within 1 to 10 years after the onset of symptoms.
Brody and every little boy diagnosed with ALD deserve the chance to fight. By donating or simply sharing this page you will help ease in financial burden for the Meadys and raise awareness of this disease and the need for every state to require ALD newborn screening. Please continue to share this page and Brody's Facebook page (Brody's Battle)
To support the family & see updates go here: https://www.youcaring.com/tara-meady-jeremy-meady-brody-meady-582910
Here is a report on their story: http://www.wfsb.com/story/32834335/ct-becomes-second-state-in-the-country-to-test-for-ald#