**Schaefer's Story, In Mom's Words**

Schaefer Matthew Thomas Mezzacapo is a healthy growing 6yr old that has had the cards stacked against him before he was born. I delivered him at 38yrs of age and described as geriatric mother, so it was recommended that I get all the tests available to me and all looked great. Then at the exciting 20-week sonogram - that my daughter and mom were so excited to be a part of - I got the scariest news: that Schaefer’s brain had excess fluid and they weren’t sure how severe it was, but let me know how serious it was and referred me to a fetal maternal specialist, all while trying to keep my composure in front of my 8yr old. Next came the MRI and sonograms in Pittsburgh and he was diagnosed with “Moderate Bilateral Ventriculomegaly” (enlarged ventricles) and they found brain abnormalities that will affect him but wouldn’t know how until he grew and we could see what if any physical/mental challenges he would have. All that news hit me like a brick and after that they gave us all of our options, one of them being if we wanted to abort the pregnancy (NOT EVEN AN OPTION FOR US) or continue with a birth plan for a high-risk baby. We had the best neonatal team ever and planned to deliver in Pittsburgh and the neurosurgeon and neurologist were right there to step if anything arose. Birth was seamless and was so happy to be able to hove him and breast feed him before he was whisked away. He had many tests that day and had a seizure and seizure like activity called myoclonic jerks and ended up on phenobarbital and Keppra and that made the hospital stay longer. On a good note he did not require the shunt for excess fluid in brain and was stable to go to children’s hospital of Pittsburgh. After a long 10 days a scary diagnosis and meds we were able to go home but was so nervous about having a newborn with issues we couldn’t see or fix.

Healthy birth Complete

Time to start Physical Therapy at 4months old and right away we knew he had low muscle tone and wasn’t able to hold up head for long periods of time. Most babies walk around one year of age and Schaefer was just able to sit at one and crawl on all fours, he arm crawled for months and we could see that it was easier for him to pull himself when his legs wouldn’t listen to his brain. The most apparent early signs of CP are reaching growth milestones, such as rolling over, sitting, crawling, and walking. His therapist looked for signs such as abnormal muscle tone, unusual posture. Schaefer showed signs of all the delays listed and there are many more but before 1yrs of age we had a good grasp on what his delays were.

Help US Help SCHAEFER

When Schaefer turned 3yrs old…

is when his neurologist discussed a diagnosis of CP due to his gross motor delay and test results. Cerebral Palsy is a neurological condition which primarily causes orthopedic impairment caused by brain injury or abnormality that interferes with the brain cells responsible for controlling muscle tone, strength, and coordination. CP is a group of conditions, signs, and symptoms that vary from one individual to the next that range in severity , usually in correlation with the degree of injury to the brain. Many symptoms are not readily visible at birth and will appear with in the first 5years of life as the brain develops. Having the diagnosis of Spastic diplegia CP opens up more doors for therapies and government programs to help him succeed.

Schaefer was able to be fitted for AFO’S (leg braces) …

for stability and has gone through 4 pairs as he grows. He has received his walker and arm crutches that he uses daily at school or out of the house and was fitted for a wheelchair when i no longer could carry him far. As a kid a wheelchair was so fun and he just wanted to do wheelies but as a mom it was hard to admit that I needed the help, but this gave him more freedom to do things on his own and start on his journey of independence. We are now at age 6 and his growth and strength are best shown in his videos…

Calling all Schaefer Squad Supporters

Schaefer is a 6yr old boy with bright orange hair and diagnosed with Spastic Diplegia Cerebral Palsy. He likes playing simulation games like farming simulator and Fortnite and Roblox. He loves machines and has drove a skid steer , excavator and his Silverado truck. He can’t run but he will keep up in style. Christmas music has driven this kid since he was tiny and now has moved on to 6foot Santa animatronics. He loves Halloween animatronics as well and can tell you the year they displayed at spirit halloween and how popular they are. His interest on how they are assembled and seeing all the moving parts shows that his brain appreciates the most minute detail, because with CP I’ve learned that one small kink can mess up how it functions.

CHALLENGES

Schaefers list of challenges are what affect his ability to walk with ease and they affect his ability to do daily things like using bathroom, getting dressed and brushing teeth and not being confident to do things independently.

1. Hypotonia - which is low muscle tone and proper muscle tone - allows limbs to bend and contract without difficulty enabling an individual to sit, stand and maintain posture. This is one of his biggest challenges because muscles work in pairs to contract or relax at same time but Schaefer’s muscles do not work together making it difficult to simply sit up without falling over.

2. Dystonia - fluctuating muscle tone or tension ( too loose at times and too tight at others)

3. Muscle spasms - involuntary muscle contraction

4. Clonus - muscular spasms with regular contractions (fast pace shaking in his feet)

He is a fighter through and through and works so hard towards his goals.

**The financial strain is hard…**

because not many jobs would give you the freedom to leave 3 days a week for appointments. Knowing that, a normal 9-5 isn’t possible when you’re a mother with a kid with special needs. I don’t know what I would do without the family and friend support. Sending him to school the first year was not easy because he didn’t have an aid that was reliable until the end of kindergarten and his safety is most important. I recruited his aid Donavin and had to leave the agency I was with because their hiring guidelines were too strict. He doesn’t need a nurse, just an aid for physical safety needs. When a young man showed interest and Schaefer already knew him, they bonded instantly, and they love each other and I couldn’t feel more blessed to find him. He is not only an aid he is now part of the family.

“So many friends just call to come have some “Schaefer Time” he can cheer up anyone and make them feel so loved. ”

— Mom

**The unique challenges that come with raising Schaefer would exhaust anyone,**

Thanks Dad for your willingness to allow us to help, and thanks for sharing your story Mom! We know you both work TIRELESSLY to help Schaefer GROW, and we are dedicated to helping you in the same way you and so many others helped Swede when he was in a time and place where he could not help himself!