Chase is a vibrant little boy born on November 1, 2014. Here’s Chase’s story!
It’s TIME!! Baby Boy number 3 is on his way! The EXCITEMENT, the RUSH, the FEAR of another child on the way is different for every mother but Jessica was eager to meet her little bundle of joy! The pregnancy was very typical. All signs were pointing to a very healthy baby. But that wasn’t the case…
Chase was born with a gene mutation. A very rare mutation. In fact, he was only the 28th person diagnosed with what is known as KAT6A. Along with the gene mutation came many other diagnoses including Congential Heart Defect, Global Developmental Delay, Laryngomalacia, Optic Nerve Hypoplasia, Nephrocalcinosis, Hypotonia and is dependent on a G tube. Diagnoses most of us can’t even pronounce let alone fathom the journey this family would now be on.
Chase was brought straight to the NICU after delivery. In a whirlwind of events, the family maintained their optimism and within 2 days of his birth, the team of doctors discovered Chase had 3 holes in his heart. With a congenital heart defect, doctors will typically perform standard chromosomal testing. Chase tested negative for all the tests. As days led to weeks, it was decided that it would be in Chase’s best interest to get a feeding tube. At only 5 weeks old, this little boy underwent his first major surgery.
Still unable to take their little boy home, a second surgery was performed. This time Chase was 7 weeks old. Open Heart Surgery. The surgery was a success and FINALLY at 10 weeks old, Chase was brought HOME but there were still many unanswered questions.
Over the course of the next few months, Chase underwent more genetic testing. Results… NEGATIVE. It wasn’t until the geneticist decided to do what’s called Whole Exome Sequencing. This particular test looks at every gene in the body. After 7 long months, they finally had the answer. KAT6A…. umm what?? You see KAT6A is an extremely rare genetic mutation. Not much is known about this current condition. As mentioned earlier, Chase was only the 28th person diagnosed.
Chase and his family spent many holidays in the hospital and at times felt lonely, isolated… forgotten. Chase’s mom described feeling like “we don't fit in anywhere.” Days and night spent in the hospital hoping, praying and longing to come home.
Through all these new challenges, Chase’s mother decided to give back. In tribute to all the doctors, family and friends that were there for them during these difficult times, she felt she HAD to do something to honor Chase and support other families going through similar situations. Chase’s Toy Chest was a way this family could give back.
Chase’s Toy Chest (started in October 2015) is now a non-profit organization dedicated to supporting children and their families at local area hospitals. In just over a short amount of time, Chase’s Toy Chest has raised over $3,000 and a wide variety of toys! In fact, just this past Halloween, the family was able to bring Halloween bags to children at the hospital as well as donate 100 pumpkins pies to the families for Thanksgiving.
Not many know the typical schedule for this little boy and his family. Participating in therapies 6 times a week, doctors appointments at least twice a month but this little boy and this amazing family still find time to give back to other so they never have to feel lonely, isolate and forgotten.
When asked how Chase and his mother manage it all, she says “I know that Chase may not be with us forever, so I cherish every day I have with him. We work hard to set him up for the very best success” “We have also met so many amazing people on this journey including doctors, nurses, therapists and other families with special needs children”.
Many times our lives bring us on an unexpected journey. With grace and optimism, this family continues to strive to give back to others. For this reason, Physical Therapy Consultants would like to show their support to Chase’s Toy Chest. Each clinic location will be collecting donations to give to this amazing organization. We will be collecting donations Dec 5, 2016 to Jan 6, 2017. Stop by any of our 6 clinic locations in Andover, Ham Lake, Saint Francis, Isanti, Zimmerman, and North Branch to drop off your donation. A wish list of donation items can be found at www.physicaltherapyptc.com or www.chasestoychest.com.