Meet the Kids – Braeden!

Meet the Kids – Braeden!

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

Meet Mia

Image result for : Hemimegalencephaly

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

 

Meet the Kids – Abby!

Meet the Kids – Abby!

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/

Thank you!

 

Meet the Kids – Variety KC helps David to Walk

Meet the Kids – Variety KC helps David to Walk

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/

Meet the Kids – Ethan, The Social Butterfly

Meet the Kids – Ethan, The Social Butterfly

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/

Thank you!

Meet the Kids – Adelaide!

Meet the Kids – Adelaide!

Adelaide (Addie) was born premature, at 26 weeks, and had a severe brain bleed within her first week of life. She was later diagnosed with cerebral palsy and a seizure disorder. The need: Addie is wheelchair dependent and a handicap accessible van would allow our family to continue going out in the community together and help Addie get to/from her medical appointments and therapies safely. Read her amazing story as told by her mom:

“Our family has grown rapidly in the last six years…we are a busy family of six, including an almost 8-year-old, two 6-year-olds, and a 5-year-old. In 2012, they adopted their eldest son, Stevie, through the foster care system. The week after we finalized his adoption, we received a shocking call from the state. His biological mother had just given birth to twins. They were born premature at 26 weeks and weighed less than 4 pounds combined. They had no names and their future was uncertain. We started visiting these tiny humans in the NICU. “Baby girl” was bigger than her brother, as she weighed a fierce 2 lbs., 1 oz. Sadly, she had a severe brain bleed within the first week of life, which resulted in hydrocephalus and the need for a shunt. Thankfully, she proved to be a FIGHTER. In December 2012, while the twins were still in the hospital, we found out I was pregnant. We had tried for years, so the timing was interesting to say the least. In January 2013, we got to bring the twins home as foster placements. We were so nervous, as Stevie was not quite two, “baby boy” was on oxygen, “baby girl” had a scary incision on her head, and I was pregnant. By God’s grace the kids thrived and we, the parents, somehow survived. In May 2013, we were blessed by finalizing the twins’ adoptions. They officially had the names they so deserved, Drake Joseph McDonald and Adelaide (Addie) Harper McDonald. Then little sister, Piper Quinn, joined the crew in August. Shortly after Piper was born, Addie started having infantile spasms, a type of seizure disorder. This was so heartbreaking, because she had already been through so much.

The next few months and years were a whirlwind. Addie has had 15+ surgeries in her six years of life. She was diagnosed with cerebral palsy and is wheelchair dependent. Despite these difficulties, she is the happiest little girl and so loved by her family (and everyone else who meets her). She is mostly non-verbal, but still more funny and ornery than you can imagine. Addie is a JOY and continues to amaze as she progresses and learns new things. However, as she continues to grow, we face new challenges. This girl that could once be held in one hand, is getting harder to lift safely. We are in the process of adapting our home and could use help raising money for a handicap accessible van. The cost of adapting a vehicle is expensive and not covered by insurance. Having a van like this will allow us to continue going to community activities as a family and to get Addie to/from her appointments and therapies safely. I have gone part-time at my job, in order to take Addie to her many appointments and be with her and the other kids before/after school. This loss of income has been hard, due to our already tight budget and financial obligations. We currently cannot afford to convert a van on our own. Any help will be so appreciated!”

Addie’s family has an abundance of love and is so dedicated to their kiddos and the special needs they face. Their optimism is so impressive and Variety KC partners were eager to help them! If you’re moved to help Addie’s family and others like them – please donate today – www.varietykc.org/donate/