Squishy Boy Boom Boom

I have lots of big words that are used to describe me, like cerebral palsy, spastic quadriplegia, hypertonicity, cortical visual impairment, sensorineural hearing loss, epilepsy, hip dysplasia (that got fixed last year), gastrointestinal motility disorder, and encephalopathy. But my favorite words to describe me are fun, determined, sweet and cool!

I have what is called Shaken Baby Syndrome. I was born a very healthy boy, but my brain was injured from being shaken. All those big words come from my injuries.

I was 4 months old, so I don’t remember much about it, but I do have what the doctors call PTSD, and I have seizures when specific noises scare me, so I guess I kind of remember some things. I can’t speak in words, can’t walk (but I have been taking steps in my Trexo, which is why it is so important for me to raise the money to keep it), and I can’t eat by mouth (I can, but they won’t let me), but I am sure full of joy and so much potential.

I was adopted by the woman who was my nurse when I left the hospital as a baby. Mama tells me that I am the sweetest boy, the smartest boy, and that I can do anything that I set my mind to. There are a few things that really make me happy. I love the drums, love to see lights, and love to stand. Mama used to be able to hold me for a really long time and let me stand, but I just kept getting bigger, and I want so badly to learn to walk.

Because of my injury, I had to have surgery on my hips, so I had to take a long break from learning to walk with what’s called a gait trainer. Then I got really sick and had a setback in the hospital, so I wasn’t able to keep working in therapy to get stronger.

Mama found a website that has these super cool bionic legs that can help me learn, and she said that she will move Heaven and Earth to get them for me. She also said that it will make me feel so much better, too. I guess walking will build my core strength, endurance, postural alignment, and flexibility. It will strengthen my bones, joints, lungs, and heart; help my bowel function (super embarrassing, but a big ‘stinking’ deal), increase my alertness, boost my immune system and energy, improve my mental health, and body awareness, and allow me to interact my surroundings.

Guess what? Since I wrote that stuff, Mama got me the Trexo (with the help of some wonderful people) and it really is true – I feel a lot better and I have gotten so much stronger.

These bionic legs cost lots of money. I overheard Mama talking about them.

I want to help pay for them and heard about having a lemonade stand. So, this weekend I will be at the Lapel Village Fair (Fri 7/8 noon-8p, and Sat 7/9 9am-8pm) ready to work to help pay off my new legs.

I appreciate you reading about my story, sharing my story, and considering donating to my new legs. My Mama said something about social media, too, and that she plans to put updates on there in case you want to follow along and see me walk someday soon.

Email [email protected] for more information.

Family and friends of Squishy Boy are raising money through the nonprofit Help Hope Live to fund uninsured medical expenses (like the Trexo) associated with Catastrophic Injury.

Squishy has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!