I have such a little angel in my son, D'aigrepont Paul, who is nine years old. That he is still here is nothing short of a miracle in my eyes.
D'aigrepont (named after my favorite singer, Bruce D'aigrepont, who is a Cajun music legend) seemed healthy at birth, but between the ages of six to nine months, there were subtle signs that something might be wrong; so I took him to our pediatrician, like any good, concerned parent should. The pediatrician, in kind, suggested that we see a geneticist because she was sure something genetic might be wrong with him.
Turns out that she was, unfortunately, right. My son was diagnosed with Tay Sach's. It is a rare neurodegenerative disorder that causes increasing disability and loss of developmental milestones until the affected child (or infant) can hardly do anything for themselves. It is a very tragic condition, but I am willing to do anything possible to help my boy stay alive. He has already outlived doctors' predictions by five years. I know he won't live as long as my other children, and that is sad, but while he is still here, I will do everything possible to help him have a good life.
Tay Sachs hits people who are primarily Jewish, but another form (the kind my son has) has been rather prevelent in those who are of Acadian (Cajun) French background. It is a terrible disease; I wouldn't wish it on my own worst enemy.
At the age of nine, D'aigrepont can no longer walk or talk. He is in a wheelchair and requires twenty four hour care. He can see and hear, but not much else. He is fed by a tube because he can no longer swallow or clear the secretions from his throat (I have to suction him numerous times during the day) and has to wear diapers. He has been in and out of the hospital because he is so prone to pneumonia or any other respiratory-related illness. Yet he is my everything, and I would go to the moon and back to help him. I am his mother; I believe I do owe D'aigrepont that much.
Besides D'aigrepont, I have a son, Kyle Richard, who is 11, and a daughter, Meghan Brenna, who is 15.
I was married, but my stupid husband left me for another woman when he discovered that our youngest had an incurable illness.
Bastard!! He took the easy way out.
Angry?? You bet!! He could have stepped up and be the father he should have been to not only Meghan and Richard, but especially to D'aigrepont! D'aigrepont didn't ask to have this illness; it's not his fault! (Turns out that both Paul, Sr. and I both carried the defective gene that passed the Tay Sachs disorder on to our son. Amazingly enough, our two other children were not affected.)
Because of D'aigrepont's health needs, I work from home. I have a small mail order business to try to earn some extra money, but even with that we're often in the hole because D'aigrepont's medical bills are so high. We have had to sell our two cars and other items (including my father's Cajun accordion, which about killed me) to try to get some extra cash, so we could pay off some of the mounting medical bills. It's been a pain, but as I said, I would do anything to help our son.
Well, it's about time for me to give D'aigrepont his evening "meal" and 7:00 meds, so I will go for now. Just keep us all in your prayers; we could really use some financial assistance! I would greatly appreciate any (and all) prayers! Thank you in advance!
~Merthalene Quebedeaux, St. Francisville, Louisiana.