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Reed’s Story

 

“We could not be more grateful for the Institute. Because of the Siskin Early Learning Center, we have peace of mind that Reed is getting the best care, individual attention, stimulation and resources that he needs to thrive.”

  --Katya, Reed’s Mom  


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When our son Reed was just 10 months old, he was diagnosed with Bardet-Biedl Syndrome(BBS).

Most people have never heard of BBS. It is an extremely rare genetic disorder affecting only 2,500 people in the U.S. The disorder is so rare, it requires both parents to be carriers of a recessive gene and of those couples, there is only a 1 in 4 chance that BBS will be passed to a child.

Many things are still unknown about BBS, but the most common symptoms include behavioral and developmental delays, heart and kidney disease, diabetes and blindness. It is also difficult to predict when and/or if the symptoms will display themselves and their severity.

Reed’s diagnosis pulled our family into a dark place we were not ready for. Having a child with a rare genetic disorder makes you sad, confused, angry, scared and desperate. But what you feel the most is helplessness. As a parent your role is to care for your precious baby, to raise him, protect him, keep him healthy and safe, so he can grow up strong and independent…

Well, all of that was taken away in a split second. The feeling of helplessness to change Reed’s diagnosis, to reverse things, to bargain and give up anything to make our child healthy again, was overwhelmingly crushing and dark.

No family deserves to feel helpless.

Fortunately for us, helplessness turned to hope when we found Siskin Children’s Institute.

Reed’s therapist at the time told us about the on-site therapy and nursing staff, the inclusive classrooms and that the facility was catered to serving children with special needs and right then, we were filled with a huge sense of relief, knowing this was the place for Reed.

At a year old, Reed began his journey at Siskin Children’s Institute that would change our lives. Within weeks we noticed changes in Reed. He became more active and was even excited to go outside on the playground, where he could interact and play right alongside his new friends. His social skills grew. He was more engaged in classroom activities and interacting with his peers.

Reed receives therapy in the classroom and has made tremendous strides since beginning his journey at Siskin.

Reed is five years old. He will start kindergarten next fall. As parents, we could not be more grateful for the Institute. Because of the Siskin Early Learning Center, we have peace of mind that Reed is getting the best care, individual attention,stimulation and resources that he needs to thrive.

 

—Katya, Reed’s mom