Amanda the fighter
Little Amanda has exceptional grandparents who have set up the Amanda-Raymond-Lamoureux Foundation for DiGeorge Syndrome.
In January 2007, just as I was about to experience one of the most beautiful moments in the life of a future grandmother, I received some terrible news, one of those pieces of news that you never want to hear, and which leads you down the unknown path of illness.
It was then that the doctor told my eldest daughter, then 6 months pregnant, that her long-awaited baby-to-be had a congenital heart murmur (CIV) just like her. The doctor ordered additional blood tests for my daughter.
The results told us that my daughter, aged 20, was suffering from Di George syndrome. A genetic disease that was previously unknown to me. What’s more, they informed us at the time that the baby would also suffer from this disease, as it had symptoms.
It’s hard to imagine that my daughter was suffering from a genetic disease without having been informed of it all these years of medical consultations. Now that I’m better informed, I can see that she had many of the typical symptoms of Di George syndrome, and that the doctors never diagnosed it.
In April, my granddaughter Amanda was born. Although I had read up on the syndrome, nothing had prepared me for the postnatal diagnosis. Amanda was born with several organ anomalies characteristic of Di George Syndrome, her life hanging by a thread. It was at this point that I realized I was in dire need of courage and support. So I made another search, this time for help in times of adversity. What a surprise to discover that no organization could help me! That there was no way to find the financial support I needed! That, unfortunately, there is no way to prevent it!
This disease is rarely detected and diagnosed.
Faced with these shortcomings, I decided to create this Foundation to fill the gap and help as many people as possible. I spoke to my friends about the project, and they all supported me, so that together we could create the A R L Foundation for Di George Syndrome. I believe that the generosity that lies in every heart will enable us to reach our goal, so that we can help people without financial means, and also provide them with much-needed moral support. The names of the sick people we help will be written down and mentioned on the foundation’s website. The people involved in this foundation are all volunteers, but they have one thing at heart, and that’s to help. When you see fund-raising events or activities organized to raise funds, please give generously. In closing, I have only one wish: that this foundation, born from the depths of my heart, may grow in yours.
On behalf of the people suffering from the syndrome who are waiting for a gesture from you, on behalf of the Foundation’s volunteers and on my own behalf, thank you from the bottom of my heart.
Richère Céleste Raymond, the grandmother, actively supported by Serge Mailloux, the grandfather