Sweet Charlotte

We welcome Charlotte’s mom as a guest blogger today to share her story.

At 9 months old, Charlotte was diagnosed with a rare terminal genetic condition called Mucolipidosis Type 2, or I-Cell disease. I-Cell Disease is an extremely rare genetic disorder where the body secretes the enzymes that break down the body’s lipids, sugars, etc. With this, the body takes these things that aren’t broken down and forms inclusion cells (hence the common name I-Cell) that deposit into the blood. These inclusion cells build up in the body and start to negatively affect children’s organs and build up in their airways.

Sadly, the disease is terminal. There is no known cure, and many children spend their lives riddled with respiratory and/or cardiac problems. They are in and out of hospitals, specialists offices, and therapy sessions their entire short lives. Children stop growing by the age of two. Many never walk or even talk. They struggle eating and fail to thrive. Many children do not survive to see their fifth birthday.

Charlotte has had respiratory issues her entire life – being hospitalized for pneumonia more times than we can remember. Unfortunately the disease has definitely taken a toll on her little body. However, with lots of amazing doctors and nurses, she’s a happy 4 year old who, although not a “normal 4 year old”, is doing more than we thought she would ever to be able to do and we have been given another year with our precious daughter!

Alys was amazing! Her communication throughout was perfect and THE CAKE! It literally brought tears to my eyes when I saw it. The party was such a sweet celebration of another birthday with Charlotte and her ice cream-themed cake made the celebration even more sweet and special. Thank you to this amazing organization to our baker Alys! We could tell the cake was made from with heart and from the bottom of mine, thank you!

Charlotee’s ice cream themed cake was provided by Sugar Angel Alys Roman with Alys Cakes & Bakery in Windermere, Florida. Thank you Alys for all of your hard work and dedication to Icing Smiles. We look forward to seeing more “smiles” from you in the future!