Meet the Kids – Jacob!

Jacob has been diagnosed with a 1.21 Mb interstitial deletion of chromosome 17q22. The result of this deletion has caused a number of known and unknown issues for Jacob. He has microcephaly, reduced muscle tone, and mental and physical developmental delays. There are only a few other children in the world who we have found to have a similar deletion and therefor not a lot is known about what Jacob’s future looks like. As of right now we know that this deletion causes contractures of large joints in Jacob. He has always had an unsteady gate and can’t run very well. Jacob is currently wearing orthotics on his ankles for assistance, making it difficult for him to pedal a bike. He is not on the autism spectrum but stimulates himself by curling his hands and waving his arms. He is very interactive with his peers and loves being around others.

Jacob was born 4 weeks premature. Ever since he has been met with many challenges. Fortunately, through it all he has always been a very loving, cooperative, and playful child. Jacob loves being outdoors! Now that he is 11 years old he continues to play with others, but gets frustrated when he sees them doing things he’d like to do, but can’t due to his disabilities. We do the best we can not to put restrictions on what he can and can’t do, but sometimes we have to tell him “no” because of the potential to get hurt. I know he would love to do more activities outside because sometimes I’ll find him sitting on the back porch enjoying the sunlight or waiving his arms as he skips through the backyard (stemming). If his siblings are outside, HE is outside!

I’ve been looking for other outside outlets for a long time. Ever since he could walk we’ve tried to put him on bicycles, tricycles, scooters, etc. without any luck. When he was small enough I’d take him for rides in a bicycle trailer and he loved it. As he got bigger we were able to put him on a co-pilot seat post mounted trailer. He was able to hold on and we stayed mostly on paved paths. Now he is too big for any of those types of devices. The bicycle I’m requesting is very versatile. It can carry a lot of weight (110lbs on the rear cargo rack) and is lighter than most other “cargo” type bicycles. It is considered a mid-tail cargo bike, which means it is shorter and therefor more maneuverable. This will allow us to transport it on family trips, and go off road on some trails. It is also a “fat-tire” bike, which provides more stability, a nicer ride, and gains better traction in the snow (for winter time riding). This bike will allow Jacob to ride along with us on our family outings more often. It will also provide another way for him and his siblings to share time together as they are big enough to pedal this bike.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Jeremiah

Jeremiah is an outgoing despite being non-verbal. He was diagnosed with cerebral palsy at age two and autism at age five – and yet, his single mom says she was truly blessed with a precious angel! Today, her greatest wish is for him to communicate. Variety granted that wish – and gave Jeremiah an iPad of his own. Now, instead of tugging on his mom and trying to indicate what he needs – Jeremiah can actually ask for what he wants and needs. Jeremiah has always been a pretty happy fellow and doesn’t truly realize that he has different needs than most. Now, with the help of a communication device, his world has gotten even happier, less frustrating, and more rewarding.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Glenn!

When you look at this photo of five year old Glenn, you can tell he has a lot to say. Turns out Arteriosus and Autism Spectrum Disorder have left him with delays and very few words. He has a few words he speaks and signs. An iPad would open up his world and allow him to communicate with his family, teachers and therapists.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Lindsey!

Lindsey is a happy toddler with a neurological condition resulting in lack of communication.  Her father describes daily life as a “guessing game” as to what Lindsey wants.  An iPad and apps will allow Lindsey to communicate her needs and wants. Her father says it would be the gift of a “voice” for Lindsey.  Variety donors have spoken!  And Lindsey has her “voice” — and her family finally has a way to communicate with her. Can you imagine the relief after all that frustration?    If you can imagine it, please help another child like Lindsey by supporting Variety KC.  All donations stay right here in our own community.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet the Kids – Isaiah!

Isaiah was diagnosed with Duchene Muscular Dystrophy. The symptom of muscle weakness usually begins around the age of four in boys and worsens quickly. Typically muscle loss occurs first in the thighs and pelvis followed by those of the arms. This can result in trouble standing up.

Isaiah faces challenges when walking long distances. Over the course of the day at school or while with our family, Isaiah wears down physically and mentally. The SmartDrive scooter will vastly improves Isaiah’s quality of life. The scooter encourages good posture and also allows Isaiah independence and saves his energy during a day with a lot of walking.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution

Meet Ronan!

Meet Ronan!

Ronan has global developmental delay with no diagnosis as of yet. We have seen a neurologist and geneticist and have done numerous tests and nothing has come up. He is currently receiving speech and physical therapy through St. Louis Children’s outpatient program and is enrolled in Speech, OT and PT through Missouri First Steps.

Ronan is a very sweet boy with a global developmental delay that we cannot find the cause of. His physical inabilitlies are prohibiting him to taking part in activities that kids his age are able to do. Ronan is very happy and social and loves being around people. I loves to play and I know he would love a toy like this that would give him the independence he desperately wants but we have a hard time giving him due to his physical inabilities. I believe this car would help him gain confidence and would encourage him to move and be more independent.

If you, like Variety, believe every kid should be social, be active, and belong – please donate today – www.VarietyKC.org/donate

Thank you for joining our #inclusionrevolution