This morning we found out that a sweet little boy we’ve come to love from our CDG family passed away in his mother’s arms. The news is devastating and heartbreaking for all of us. As parents of a child with CDG, we typically look at the age of 3 as a milestone, that our child has reached a point at which they are somewhat “safe” from the infant illnesses, multi-organ system complications, and other side effects and scary prognosis that this disorder carries.
Joel was 4 ½ years old. He was healthy. His parents routinely shared videos and stories of his amazing progress. Even though we have never met Joel in person, we know him as family, we routinely look to his parents for advice and direction and Bianca loves to smile at Joel’s pictures and videos. The CDG family is worldwide, and yet, so close that each ones triumphs, and tragedies are universally felt.
Joel is actually the second little boy with CDG who has passed since the New Year. The holidays are a particularly difficult time for our kids. Even as adults we all know we can become a victim to the common cold and viral bugs that get passed around at large gatherings. But for children with CDG, their little bodies are too busy struggling to maintain the delicate balance of everyday life, that even the common cold or virus can cause complications that quickly spiral out of control. For these two angels, Joel and D’Chayro, who have earned their wings… we wanted to share their precious pictures…
Each time a child from our CDG family passes away it unlocks that box that we keep trying to hide deep inside. It makes the horrible things that this disorder is capable of seem to move from a possible prognosis on our children’s medical files to reality. It isn’t fair, there is no treatment and there is no cure for CDG.
CDG is a rare disease, and because of this, there is no funding. The good news is that our worldwide community of expert doctors and researchers are just an email, and in some cases, just a phone call away. We know them by name, they know our families. They chat with us online, and they directly answer our questions. We, as families of CDG children, are left with the responsibility to raise funds for their efforts. And, to ultimately find a treatment and cure for our children.
But, for now, all we can do is send all of our thoughts and prayers to these families who have lost their little ones, of course, wishing there was more we could do. We must continue to be strong for Bianca, to be grateful for each and every day that we have with her, and that we can only pray that we are blessed with her laughs and smiles for years and years to come.
A friend of ours shared this today – it is so true.