From Our Parents...

WILL'S STORY was first shared by his parents, Owen and Jill Hubbs who were the guests speakers at our Black and White Birthday Ball:  William Owen Hubbs was born October 10th, 2003.  The pregnancy and his birth were without complications and for all accounts we were the proud parents of a happy and healthy little boy. We had no indication that Will was born with a unique genetic translocation and by the end of his first year our world would be changed forever.  Will’s first few months were fairly textbook but by the age of 9 months Will had missed several developmental milestones and we began to get concerned that something may be wrong.  At first our pediatrician downplayed our concerns but by his 12 month checkup our Dr. became alarmed that Will was not crawling or babbling.  Our pediatrician started throwing around words like “Cerebral Palsy, Stoke, Neorodevelopmental Delay” to describe what might be causing Will to miss his milestones.  This was the moment we began our journey into the life of parents of a child with special needs.  Read their entire story...

MARA'S STORY:  “In early 2008, we began taking our daughter, Mara, to CTC to help her with various issues resulting from her diagnosis with a tumor on her brain stem.  Knowing her diagnosis was dismal and that we did not want to do anything that Mara did not enjoy, we proceeded with therapy with the assistance of Mara’s physical therapist, Karen Baker.  From the time they met, Mara was in love.  Every session of therapy was play-time and invoked smiles and laughter.  Mara loved Karen and chose to see her instead of attending birthday parties or playing with friends during the summer.  We loved that our other children were allowed to participate in Mara’s therapy and felt welcomed when they occasionally came.  To our absolute devastation, Mara passed away on September 22, 2008, as a result of her DIPG diagnosis.

Karen and CTC provided countless hours of happiness for our little girl and we hope to be able to spread this joy with others.  In Mara’s memory, we hope you accept our donation of $1,000.  Please thank Karen for all she’s done for our family."  - Heather Adams and family

SAMUEL'S STORY:  Each week, Samuel is signed up for a therapeutic horse ride.  One week, we were in a hurry and he didn’t wear his orthotics.  Instead, he wore is little car shoes.  Well, the time came to ride the horse and Samuel refused, insisting that he needed to wear his orthotics in order to ride the horse.  No amount of persuading from the staff, or from Daddy on the phone, could convince him that it was okay.  So…no horse ride that week.  But, you have to give the kiddo credit for knowing that he should be wearing his orthotics and to do things right no matter what!   -Bobette, Samuel’s Mom  For this article, Samuel very generously let us sit in on his orthotics appointment - read the whole article

HILARIO, A STRONG KID:  His Mother’s curiosity may have saved his life.  Although she had a “normal” ultrasound five months into her pregnancy, at about seven months, Amy was curious to get another glimpse of her firstborn.  Her physician agreed to do the additional ultrasound because he was unable to get a clear look at the baby’s heart during the first one.  It was then they discovered the baby had Hypoplastic Left Heart Syndrome.  Armed with this new knowledge, Amy’s physician changed the delivery to Swedish Hospital, a facility better equipped to handle high-risk deliveries and newborns.  Hilario Ramirez was born to a room full of doctors on February 22, 2006.

It was immediately determined that Hilario would need a heart transplant to survive.  Within seven days of his birth, Hilario had his first heart surgery known as a “Hybrid” to help him survive until a new heart became available.  In January 2007, Hilario’s parents received the call they had been waiting for and he was rushed to the hospital.  While the heart transplant was considered a success, the surgery was a mixed blessing.  At some point during the procedure, his nervous system was compromised causing paralysis from the waist down.  Hilario had been given the opportunity to grow up, but would do so without the use of his legs.

“We left the hospital almost 4 months after Hilario’s surgery, with a challenging journey ahead of us.  He was15 months old and he needed to learn to sit and crawl all over again.  We felt isolated and alone, and weren’t sure if we had the tools to deal with everything.  This was a difficult time for our family, but my son has remained positive and is a constant source of strength and hope.” 

Almost immediately, after Hilario was discharged from the hospital, a physical therapist, a speech language pathologist, and a family resource coordinator  from the South King Early Intervention Program  (SKIP) started providing therapy services in their home  “They not only helped my son, but they allowed us to vent and helped us cope.”

“Receiving services in our home has helped us learn how to use what we have at home for therapy.”  One of the first things the SKIP therapists helped Hilario with was to relearn how to move around in his home.  His therapists brainstormed with Amy, and then designed a scooter that Hilario could lie down on and use his arms to propel himself.  They arranged for the father of another employee to build the scooter.  It was red and shiny – every boy’s dream car!  Amy reports that the scooter was very motivating for Hilario.  It gave him a new freedom and was instrumental in building his upper body strength, which would ease the transition to a wheelchair later on.

Now, at 2 ½, Hilario is strong and very active.  In addition to seeing his therapist at home, he loves going to the SKIP playgroup and going on field trips with the kids.  Hilario’s physical therapist arranged for him to be fitted for his first wheelchair which he just received a few weeks ago.  Amy says he is a natural, and learned how to wheel himself and change directions all by himself.  She was happy that he got his wheelchair in time for the most recent SKIP field trip to Les Gove Water Park in Auburn.  “Hilario would wheel himself over next to the water spouts so he could get wet.  He loved it!”   Read the entire article