Sunday, May 31, 2009

One in a million!!

The following is a letter Andre' and I recently sent to our community!! We got many amazing responses and feel so grateful for the support we have from our friends and family!!!

Dear Friends and Family,

Twenty-one months ago when Soliz was born we were shocked to find out he was born with a rare chromosomal condition called 4Pminus. We came home and wondered how we were going to survive; it felt as if our lives had just been turned upside down. Looking back it’s been a wild ride with the lowest of lows and the highest of highs that most parents of typically developing kids don’t always stop to appreciate.

4Pminus or Wolf-Hirschhorn Syndrome means that a part of the genetic code is missing from the short or petite arm of the 4th chromosome. 85% of the time this is a freak occurrence. In the other 15% one of the parents has a translocation of genetic code that is then passed on through the sperm or egg. The percentage of occurrence when the male is the carrier is 2-5%. When the female is the carrier the percentage is 10-15%.

After Camila Rose was born we noticed she had similar features to Soliz so we immediately asked that chromosomal testing be done. After a few days of waiting for the results we found out that Camila also was born with Wolf Hirschhorn Syndrome. At the same time we learned that Andre’ is the carrier, giving it a 2-5 percent chance in each of our children to be born with 4p minus. As you can see the odds are huge to have two children with Wolf Hirschhorn!

Camila Rose has gained weight and is a great eater despite having a cleft palette. We don’t know when they plan to repair the palette as she hasn’t seen the craniofacial surgeon yet. Heather Joy hoped she would get to nurse but for now she has to pump. HJ is as solid a pumper as there ever was and committed to giving both Camila and her brother mom’s milk till the cows come home! Camila has a hole in her heart but it’s something that corrects itself and people with the same defect live long normal lives with it. Her left eye has a cleft of the iris, or also known as a coloboma iridis. The eye Dr. is very optimistic about her sight and we notice her tracking and looking already! One other issue that Wolf Hirschhorn kids have is seizures. Studies state two percentages 50 or 100 of WHS kids will have them. Soliz has only had two so his meds seem to be working. With Camila only time will tell. Health wise we’ve been blessed that Soliz is a healthy as can be and we feel Camila will be the same.

Most of the internet information about children with Wolf Hirschhorn Syndrome is grim. The literature says that most of the kids won’t ever walk or talk and will be absent of personality. We choose to look past this and hope for the best for our children. Already Soliz has surpassed the personality aspect as he is full of personality, constantly charming the people that meet him with his gorgeous eyes and smile; he has an ability to draw people to him. He laughs uncontrollably when being roughhoused by his dad. He is quite an amazing guy. And Camila Rose, we don’t know her as well yet but already see that she has a very different personality than her brother. We call her our “no nonsense” girl. We have already seen glimpses of smiles too!! We look forward to getting to know her better and better with time.

The purpose of this isn’t of scare but to inform. If you have questions then ask and we’ll try to answer. This isn’t a pity party. Our family has never subscribed to that school of thought and never will. We feel blessed and special, beyond measure! Sure the road ahead looks scary but our kids have taught us the most important thing in life and that is to live in the moment! We so are grateful for our community-family and friends-your support has been amazing!!

With Gratitude in Our Hearts.
The Magdelano’s-Andre’, Heather Joy, Roman, Soliz and Camila Rose

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