Special Spaces is an organization that creates dream bedrooms for children with life threatening illnesses. These children need a special place to heal, recover and find solitude. They spend a lot of time in their rooms and that place should be a personal space that represents their personality. Whatever they can dream or imagine the volunteers can create.
I just recently heard that Katie Martin started a chapter in my state and when I saw their first child, Carter, I jumped at the chance to make his new window coverings.
Carter is a beautiful, vibrant 5 year old who loves panda bears, Nick Jr. TV and the Carolina Hurricanes. Although he is small, Carter appear s to be a normal, healthy child. What you don’t see, is that he has a very rare, genetic-recessive disease called Fanconi anemia. This disease is so rare, that there are only about 3,000 cases currently diagnosed world-wide and only about 300 of those cases are in the United States. Carter lives near Garner with his mom and dad, and brother Ethan.
Carter was born with two holes in his heart, a hypoplastic thumb, and with both of his kidneys fused together on one side.
He has had a few surgeries, including an index polliciation procedure to remove the thumb nub, and turn the index finger into his thumb. Carter had a bone marrow transplant in 2010 and a G-tube was surgically placed in Carter’s stomach to give him extra nutrition. A hook by Carter’s bed holds his tube in place during feedings. This rising kindergarten student will always battle eating, endocrine and vision problems, and the risk of cancers for kids with FA is very high.
When Carter isn’t shuttling between Duke and the University of Minnesota Amplatz Children’s Hospital, he would love a room with either a bunk bed or a trundle so he can have sleepovers with his cousin or brother. Since Carter spends a lot of time in his room, we’d like to make it a truly special place where he can be comfortable and dream about playing in the NHL one day with his idol, Eric Staal. But we can’t do it alone.
If you would like to be a part of Carter’s makeover, or another Special Spaces child’s makeover, please contact the chapter director.
When Carter’s Hurricanes room is finished I’ll be sure to post pictures !