DiGeorge Syndrome and Blog of the Week: Wisdom Heart
This week’s featured blog is Wisdom Heart written by Michael in honor of his daughter Sophia who was born with DiGeorge syndrome. DiGeorge syndrome is caused by a deletion in chromosome 22 which means several important genes are missing. Symptoms range widely depending on the amount of DNA missing but usually involve the parathyroid, thymus, heart, and cleft lip and/or palate.
Sophia is a toddler who has Tetralogy of Fallot, a congenital heart defect, and pumonary atresia; all stem from DiGeorge syndrome. A couple of weeks ago, Michael and Patty, Sophia’s parents, received bad news from a visit to the cath lab.
What I have trouble accepting and understanding is how to accept Sophia’s life being brought to a premature conclusion. She hasn’t had the opportunity to understand the purpose of her life. She is lacking the volition and instruction to realize the potential of her precious existence.
(…)
Though I cannot validate any overall usefulness of worry, I felt it was somewhat useful in illustrating the thoughts and feelings of at least this CHD parent. I don’t think parents of healthy children have to face so directly the possibility of losing their children. Because of the conspicuousness of Sophia’s mortality, I am compelled to make the most of the time I have with her. And, to the best of my abilities, I avoid doing anything that could give rise to regret. I would never wish our situation on anyone else, but I willingly accept it. And perhaps through this blog, others can learn from our experiences without having to face the hardships directly.
Sophia is scheduled for surgery in June. It won’t be her first.
Go visit Wisdom Heart and offer Michael, Patty, and Sophia some support. They have two links at the top leading to their heart walk donation pages. If you have some to spare, I’m sure they’d appreciate anything you could give.
Technorati Tags: digeorge syndrome, chromosome 22, tetralogy of fallot, heart, heart disease, cardiovascular disease, cvd, genes, genetics, dna, health, medicine
My grandson born 0n 10/18/07 also had pulmonary artresia,tetrollogy of fallot, and di george syndrome.
Like you, we cherished EVERY second with him. He also had no immune system so, he couldn’t be shared with others much which was very hard.
The love and joy he has given us is unmeasured.
visit us at elijahslegacy.blogspot.com/
We lost him to Edema – a complication of digeorge 21 days ago……Grammie