Introducing Declan!
Declan was born with Trisomy 21 type Down Syndrome which means his body has an extra copy of the 21st chromosome. This makes Declan extra awesome! Children with Down Syndrome can have a wide range of health problems and developmental delays. Declan has lower muscle tone, thyroid deficiency, and some level of cognitive delays. When he was born, Declan had a small hole in his heart, but it closed as he grew. Declan also has Hashimoto’s Disease due to his thyroid problems. He takes medication to regulate his thyroid and is monitored closely by an endocrinologist. Declan was a happy and content baby who loved to sleep. He has developed slower than his peers in most areas and continues to need a lot of support to do everyday activities. Declan required a lot of physical therapy and orthopedic services to build muscle tone and learn to walk.
Declan has seen an ENT since he was very small because children with Down Syndrome often have enlarged tonsils and adenoids, and very small ear canals. Declan has gone through having ear tubes placed 4 times and has had his tonsils and adenoids removed to help with breathing, eating, and sleep apnea. This was a hard surgery and recovery for him because he did not understand what was happening and did not want to drink or take medicines. After a few days he needed a hospital stay at Stormont to get pain medications and fluids so he could recover quicker. Declan has done testing for seizure disorders, which thankfully he does not have, but can be common in children with Down Syndrome. Part of that testing was an MRI at Stormont where he had to be put under anesthesia because he would not tolerate the testing while awake. Declan also require a lot support to communicate. He has learned sign language and even though he can say many words he is learning to use an AAC device to help him communicate.
Declan is a silly and joyous kid who loves to laugh and to make others laugh. He loves Mario and is getting better at video games every day. He has done many therapies throughout his short 7 years to grow and develop the best he can. Declan learns best through music and demonstrations. His doctors have learned to go with the flow and let him explore before getting down to business. Declan has always done things in his own time and continues to thrive through his family and team of supportive doctors, teachers, and therapists. Like other children with Down Syndrome, Declan is at a higher risk for getting sick, developing cancer or other organ problems and he is at a higher risk for having ADHD, anxiety, depression, and Autism. Children with Down Syndrome often need supports for most of their life. While a lot of those things sound scary Declan has a wonderful family and support team to look out for him, and take care of his needs.
Declan’s high energy and desire for laughter makes him a great friend. He enjoys playing silly games, dancing around, and is learning to play soccer. Declan plays for local Top Soccer team which has children of all ages and exceptionalities. Declan will also get to participate in camps for learning to swim and ride a bike this summer through Capper Foundation. Declan may look and act different from other children, but he is still a kid in all the ways that count. As we say in the Down Syndrome community, love doesn’t count chromosomes!
