My daughter Harriet has significant developmental delays, most noticeably with her speech. She is falling further and further behind from her neurotypical peers as her language delays also add to her social and emotional delays. Harriet’s gross and fine motor delays also pose constant challenges for her. We are going to speech, PT, and OT, and have enrolled her in a wonderful preschool that will help foster her growth and progress.
Harriet has a very sweet and happy temperament. She loves exploring, singing, flipping through books, and playing in her kitchen. We love singing songs and attending music classes together.
Harriet loves climbing onto her older brothers tricycles, bikes, and scooters, but she lacks the gross motor development to make these fun ride on toys go. The Velcro pedals and hand cranks make the Amtryke a bike that Harriet can actually use! I think it will help her motor planning as well as gross motor skills immensely. She can actually be a part of family walks rather than simply being pushed in the stroller.
Variety KC wants Harriet to get active, get out there…and get involved with her family and neighbors. Harriet is getting her bike from caring Variety KC supporters. After all, doesn’t every child deserve a bike? Help us to make that happen – donate today at varietykc.org/donate/
Braeden’s Disability: Cerebral Palsy – (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles.
Braeden’s Story: He was born 13 weeks premature and spent the first 12 weeks of his life in the NICU. When he was 15 days old they were informed that he had hydrocephalus and would need to undergo surgery to place a ported shunt to be able to withdraw the fluid off his brain until he was old enough to withstand a full shunt surgery. At that time the doctors weren’t for sure how the hydrocephalus would affect his future mobility. Before the age of 2, Braeden had 10 surgeries/revisions done to his shunt. As he grew they noticed a delay in his ability to meet normal milestones of a child that doesn’t have hydrocephalus. It was determined by the time he was 10 months old that he had cerebral palsy. He has high muscle tone, spastic and dystonic reactions. His cerebral palsy and dystonia is maintained with oral medications. Braeden has a very active younger brother and sister, who he adores and loves playing with. A trike would mean he gets to ride a bike with his brother and friends in the neighborhood. Inclusion is something they value as a family, and are hoping this Rifton trike will allow Braeden to be included with his brother and sister and his friends in our neighborhood!
Braeden’s best quality is his smile, it will light up a room! Hes extremely outgoing and everyone is a friend to him. We really enjoy spending time in the outdoors and camping as a family. He loves going fishing and playing outside with his brother and sister. If he chooses an indoor activity you can catch him watching youtube, or watching his brother play games on their playstation.
The opportunity for activity and inclusion is so important for every child, especially those with special needs. Braeden will get his bike from generous Variety KC donors – please help other kids get the bike they need too! Donate today at varietykc.org/donate/
Meet Mia- She has been diagnosed with Hemimegalencephaly a rare neurological condition in which one-half of the brain, or one side of the brain, is abnormally larger than the other. The structure of the brain on the affected side may be markedly abnormal or show only subtle changes.
She seizes approximately 75 percent of her day, but since her hemispherotomy she has made huge strides in all her difficult areas. Those are physically, mentally, socially, and visual disabilities. Variety KC can help her Be Active, Be Social and Belong by providing the equipment she needs to be included! #varietykc . #inclusion #rare # belong #equipment
Abby is an active and caring young lady with a diagnosis of cerebral palsy. She uses AFO’s, or what most people call “leg braces,” to straighten her feet and help her walk better and fall less. She recently grew out of her leg braces and not eligible for insurance.
She loves playing outside with other kids, and is a very loving child with a bubbling personality and a big heart for animals. She loves making people smile and helping animals any way she can – in fact, she volunteers at a local animal shelter with her mom!
The problem is, without her leg braces, Abby can’t do the things she loves and help out where she wants. With a heart like Abby’s, of course Variety KC wanted to step in and help. She’ll get her new braces and be back playing like before – something that gives her parents so much joy.
A big thank you to our Variety KC partners who made this happen for Abby. If you would like to help other kids like Abby, right here in our community – donate today at www.varietykc.org/donate/
Meet David. On paper, David has chromosome 9p deletion (Alfi syndrome), scoliosis, global developmental delay, metopic craniosynostosis, persistent femoral anteversion, external tibial torsion, patellar instability, disorder of peroneal tendon. But this doesn’t define David. He is a young man who would like to be more independent through the use of a walker. This would give him more independence, the ability to chase his brother around the room, and they interact more closely. Here’s what David’s mom wants you to know:
“Inclusion is important for children that have special needs, because the more that the child is around a “typical” child the better they can developmentally grow. This is done by peer role modeling. So, when a child that is struggling with something and they see another child doing it, they can attempt to mimic it. This will help their development. Inclusion is also important for special needs children because it helps them not feel so outcast. They are able to build friendships and those friends will be there to help them and support them. Being accepted is something that every child needs, no matter where they stand developmentally.”
And remember, Inclusion doesn’t just help children with special needs, it benefits typical children. It makes them more considerate of others who might be a little different. It shows them how to be more compassionate and have more patience. Inclusion allows them to learn that everyone is different and that there is nothing wrong with that. You have to see the differences in others and see that they are a great thing!
Variety KC donors understand how important inclusion is and how a walker would support David’s desire to be included! Help David and other Variety KC Kids like David – donate today: varietykc.org/donate/
Ethan is extremely social, but limited due to his inability to walk and talk. He is completely dependent on his mom, but is so happy and full of life. Ethan LOVES interacting with people and flashes his winning smile to all he meets! He really wants to be able to run, chase, and play with his twin sister Katy, but he isn’t able to do much physically since he is dependent on mom to move him. He has been through so many surgeries and pain in his short little life, all in an effort to allow him to use his legs – something he wants SO BADLY to use.
The goal: Help him strengthen his legs and his bones to grow correctly. (His goal – chase his sister, filling the house with laughter). Mobility, independence, and freedom is priceless.
My son has been in a gait trainer for the last five years with problems, but the style of gait trainer led to problems due to the severity of leg crossing from Cerebral Palsy. As a result – his legs were banging and bruising, making it painful to walk. However, he’s had numerous surgeries in the last year to correct his legs and muscle tone. He had his femurs cut and re-positioned correctly, his hips were also re-positioned and put together with plates and screws. His journey has been rough. He had a baclofen pump installed, but they saw an increase in Ethan‘s seizures last year. Seizures caused his stitches to rupture four times, the last time resulting in another surgery to try to fix the stitches. Then he developed bacterial meningitis and had to have surgery again in August to have the pump removed. In January of 2019, Ethan had the plates and screws removed because they caused him so much pain.
His MRIs and EEGs indicate abnormality in the brain’s left hemisphere, causing seizures. Ethan is currently on medications to control the seizures at max doses, as well as his rescue medication – he is too medication resistant for them to do much good. His family was informed it was time to consider Ethan‘s “quality of life.” In fact, when his Neurologist looked at the EEG, he was astonished Ethan wasn’t in a state of constant seizures and is flabbergasted Ethan CAN do the things he CAN do. But he does it – and he does it all with a laugh and a smile. He shows everyone that no matter WHAT the odds are against you, no one can say for certain what you can and can’t do.
And what Ethan wants to do is try standing/walking with a new style of gait trainer on his new and improved legs….but he isn’t eligible for insurance help on a new gait trainer.
Ethan is giving up and neither are Variety KC’s generous donors! Let’s get Ethan the gait trainer he needs and see just how far this amazing young man can go! Donate today at varietykc.org/donate/