This week’s warrior is a little man close to our heart!

We have been friends with him and his wonderful family since Evie was 2 years old. We live in the same region and are involved with a lot of the same organizations. They are part of our CP community and support system. Evie is especially excited to share her buddy’s story with you all!

Meet Connor

Connor is a 6 year old boy who is smart, passionate and funny. He has a fun loving side and this is evident in his various costumes we often see his Mom share. He is usually dressed up as a superhero (he LOVES Thor) and always rocks his own style. Connor is a strong kid who has been through a lot, but as you will learn, has an exciting journey ahead!

Let’s start at the beginning…

Born at 13 weeks premature (27 weeks gestation) and weighing only 2 pounds 7 ounces, Connor started his journey in the Neonatal Intensive Care Unit (NICU). His first few days were terrifying for his parent as they were not sure if he would survive due to his lungs being so underdeveloped. He was placed on an oscillator jet to help him breathe. He was on this for several weeks. This was also a time where he was not able to be held, as his skin was too sensitive. Doctors were starting to get concerned about his head size as well, as it appeared to be growing too fast. After some investigating, they found out Connor suffered a bilateral grade 3 & 4 brain bleed causing hydrocephalus (causes increased pressure inside the skull).

Once he was strong enough, the plan was to put a ventriculoperitoneal (VP) shunt in his head to help the fluid drain (something he has today and will continue to have in place). Unfortunately, before his first shunt could be put in, Connor got very sick and developed Necrotizing Enterocolitis (NEC). NEC is very deadly for premature babies and mostly affects the intestine. Thankfully, the team at Sick Kids determined this early on and was able to treat it with medication. He then received his first shunt and after 120 days in the NICU, Connor was finally able to go home!

At 8 months old Connor began physiotherapy. His family was able to get him on early intervention waiting lists due to his prematurity. At 12 months old he was diagnosed with right side Hemiplegia Cerebral Palsy (CP). Both his right hand and leg are affected. Connor has spent many hours attending physiotherapy and occupational therapy sessions over the years. He has experienced painful Botox injections (something Evie also went through) and wears ankle foot orthotics (AFOs). Connor works hard but still needs assistance with everyday tasks. Even though he is considered to have “mild” CP, his parents worry about his future quality of life.

Exciting news alert! Connor was recently accepted for Selective Dorsal Rhizotomy (SDR) surgery with Dr. Park at the St. Louis Children’s Hospital. As we have been in their shoes, we understand the stress and worries that come with this process but we also understand the hope! With this procedure, the hope is for Connor’s spasticity to be removed which will benefit him in many ways. Connor and his family have recently launched a GoFundMe campaign to help cover the cost of the surgery, accommodations and the pre/post-operative therapy he will require. If you are able to make a donation or want to learn more, please visit their GoFundMe page at Connor’s Quest.

Connor is an amazing kid and has been beating the odds since day one! He may look up to superheroes, but many look up to him. He is a true warrior and a hero. Everything he does is with a smile on his face. As his parents said, miracles really do happen and Connor is one of those miracles!

To follow Connor’s journey, please follow on Instagram at @connorsquest or find his Facebook page. He also has a website.

Thank you to Connor and his family for allowing us to share his story. We are so excited for the next part of your story and will always be cheering you on!! Looking forward to following your life changing journey!

P.S. We would like to wish all our American friends a Happy Thanksgiving!