Meet the Kids – Macy!

Meet the Kids – Macy!

 

Rett syndrome is like having Parkinson’s, Autism, Cerebral Palsy, Epilepsy, Breathing abnormalities, and Anxiety all wrapped up in one little girl. Can you imagine?  Here’s Macy’s story from her parents:

“Macy was born happy, healthy and ready to bring joy to everyone on January 9, 2015. She smiled, cooed, rolled over and did exactly every milestone on time, until 6 months of age. She began to fall behind, she couldn’t sit up on her own, crawl, kneel, or even pull to stand, not because she didn’t try, but because her body wouldn’t let her. Our family watched as children ran and played in different areas as Macy watched. Our hearts broke to see this. June 20th, 2016 we had our answer as to why this was occurring for our daughter, she was diagnosed with Rett syndrome. We were shattered, devastated beyond belief and gut punched! HOW and WHY we asked time and time again. It took awhile and we went through a grieving process of the child we thought we would raise to come to where we feel and stand now.

Macy blessed us, she changed us, she grew us in more areas than we knew were possible! We began a yearly fundraiser for the community to learn more about Rett syndrome and how they can welcome Macy and the other children in with inclusion. We raise funds for research as the research being done will not only help the diagnosis of Rett syndrome but open doors to Parkinson’s, brain trauma, autism, and many other neurological disorders. She began therapy and preschool at Lee Ann Britain and our family worked hard to make sure Macy was included and was able to play with other children. Macy was one of the first children to get in the harness system and be on a play kitchen level with others. I cried, i’ll never forget this moment! I cry as I write it! I as Macy‘s mom have gone on to work for the foundation Rettsyndrome.org as the Family and Community Engagement Manager. Macy guided me into helping other families navigate their way through this diagnosis but also navigate this new world of inclusion and how to lead this direction. She gave us the strength and guidance without speaking a single word, that is beyond overcoming adversity, that is living it!

As Macy grows and becomes heavier for lifting we struggle with movement and strength to lift her in and out of her car seat as well as loading and unloading her wheelchair multiple times daily. We counted one Friday, 12 times! Twelve times I lifted her in and out of the car seat, all 40 lbs of heavy weight, 12 times I lifted her 100 lb + wheelchair in and out of the van, that is 24 times in one day of lifting more weight than anyone normally does all while trying to be safe and not hurt her or myself. Until I did, I hurt my shoulder, I had surgery and am still recovering to this very day because a parent like myself doesn’t get to stop. A parent’s healing is always elongated as our children still need care as they aren’t able to care for themselves. This is why a gift of a wheelchair lift for a van would be priceless to our family! We could get back to being on the move, going to parks, out to dinner, going to a Royals game, to therapies and Dr. visits all something a family should be able to do with some ease.

Macy has the ability to bring such joy in the room. Her expressive eyes and loud giggle surround you before you can say BOO! She loves to be scared and thinks it’s hilarious to hear you sneeze! She belly laughs and brings you to a rolling belly laugh with the flash of an eye. She loves to hear laughing and wouldn’t miss a party, such a social butterfly she is. She loves The Loud House cartoon, watching the Royals games on her grandpas lap, and going to school to swim! My favorite quality is the strength of Macy. She uses not just physical strength but the internal strength and grit to keep moving forward every single day with a smile on her face. We are grateful for your consideration and inclusion you drive in the community!”

Macy – Variety partners want to help!  It’s important to keep all kids and their caregivers safe – won’t you help us make this wheelchair lift a possibility for Macy and her family?  Donate today at www.varietykc.org/donate

Thank you!

 

Meet the Kids – Jonathan!

Meet the Kids – Jonathan!

Jonathan was born at 24 weeks and spent his first 6 months in the hospital. Because of his prematurity, he was diagnosed with periventricular leukomalacia (PVL), which resulted in him also being diagnosed with cerebral palsy, cortical vision impairment and feeding issues that require a GJ tube. On the GMFCS scale that ranks severity of cerebral palsy (1-5), Jonathan is a 5. He will always rely on a wheelchair for mobility, full lift and positioning by a caregiver. Please read what Jonathan’s mom has to share: 

“As a parent of a child with special needs, you pray that your child feels loved and included when he’s away from you. One of the hardest things to do as a parent is trust your child with another individual and it’s even more difficult when your child has special needs, is non-verbal and relies upon others for everything. Letting go of that need to be there to help him through everything has been difficult this first year of Kindergarten, but I’m trying. My biggest desire for my child is for him to know he’s loved by his Creator, by his family and by his peers. Part of this includes him feeling comfortable and fitting in.

Typically developing children his age are usually able to climb into their own car seats and in some cases, buckle themselves in. For Jonathan, it’s not. When I load Jonathan into my van, he’s a full lift into a 5 point harness car seat into the van. While it’s not the most important reason to require a wheelchair accessible vehicle, the idea of not having his peers see him handled like a toddler or infant is important. There’s also the safety consideration for Jonathan. Right now, he weighs about 40lbs. As he’s gotten bigger, I’ve been able to adjust to handling him, but it’s getting trickier with his weight gain (about 5 lbs in the last 6 months) and his feeding tube and venting tube lines. He is fed about 20 hours per day, so he is almost always hooked up. I’m consistently worried that I’m going to catch his feeding tube extension on his chair. It’s happened a few times already. If his tube comes out or bursts from tugging, it requires a trip to the downtown hospital ASAP.

The practical consideration with acquiring a wheelchair accessible van is that Jonathan’s chair will soon outgrow our van. We have less than half an inch left in the rear of a our van once Jonathan’s wheelchair is placed inside. As Jonathan grows bigger, his wheelchair will widen as well. It will be extremely difficult to transport him, along with his two younger brothers if we do not have space for his chair.

The reality for our family is this: as Jonathan grows, our vehicle will have to change. Our current van is 15 years old and becoming more tired. We are hoping that we can keep it going for 6-12 more months. We simply can not afford a wheelchair accessible vehicle without financial assistance from organizations like yours. To have a reliable vehicle that could safely transport all of our children would be life-changing for us. We understand that this is a large thing to ask for, but I’ve also resisted applying for assistance from Variety in the past because I’ve known that this would be a large, pressing need for us in the future.

Jonathan is a happy child who loves to interact with his peers. He has the sweetest giggle that is infectious because you never know what’s going to set off a giggle-fest. He loves music, being silly, taking walks outside and swimming. He loves to go to the park, take walks and simple things, like going to the store with mom. My favorite of Jonathan’s qualities is his joy in life. His smile can light up any room.”

When Variety KC received this letter, we knew we had to help – and we knew that Variety partners would want to help Johnathan! Having a safe vehicle that fits children and equipment is an absolute must! Transportation means access to medical services, to community involvement, and to inclusion!  Help us to help Johnathan by donating in his name today – www.varietykc.org/donate/

Thank you for being part of the #inclusionrevolution!

Meet the Kids – Aria! Go Baby Go!

Meet the Kids – Aria! Go Baby Go!

At the age of two and a half, little Aria has already endured a rough journey with many obstacles – cerebral palsy, hydrocephalus, severe developmental delay, transient altered mental status, hypotonia, and hearing loss. 

Having a ride on car that would fit her needs would be amazing for so many reasons. Hopefully she would be able to use something fun and age appropriate without all the difficulties she encounters with some equipment. It would give her such a sense of independence and accomplishment – building self-confidence. Simply being able to participate with others in a fun activity would be awesome! 

Variety KC thinks to too!  And Aria received a GoBabyGo car specifically designed for her!  Don’t all kids deserve to Be Active, Be Social, and Belong? Donate today at VarietyKC.org/donate/     Thank you!

Aria

Meet the Kids – Sienna!

Meet the Kids – Sienna!

Sienna had a brain injury before she was born and she’s had a difficult journey. It started with seizures just before she was the age of one. She is not able to feed herself or talk. She’s dependent on an adult to feed and move her. Still, Sienna has learned so much already! She’s learning to work with an assisted technology device to communicate. She’s beginning to take a few steps. And, she’s taking her nutrition by mouth and no longer dependent on a feeding tube. (She’s also being potty trained.) Sienna is a super hard worker and will only continue to do great things!

Sienna’s mode of transportation is her wheelchair. At the age of eight, she has grown too big for her parents to lift her in and out of the vehicle safely. Outings are limited and well thought through in order to get Sienna in and out of the vehicle. With a wheelchair van, Sienna would be able to get out more, to attend sporting events for her siblings, go to family fun outings and be more mobile in her world.

Inclusion for Sienna requires a wheelchair van to transport both Sienna and her wheelchair. With an adaptive van, Sienna would be able to socialize with her family, friends, and community – and explore her world beyond her house. 

Variety KC partners and donors want to help Sienna get out and experience the world. We believe every kid should have the chance to Be Active, Be Social and Belong!  If you believe that too – please donate today at varietykc.org/donate/ Thank you!