A MUM of a two-year-old Basingstoke boy living with cerebral palsy (CP) has spoken out to raise awareness of the disorder for CP Awareness Month.
Colby was born on May 4, 2019, after his mum Jodie Owen went through a long labour ending in an emergency ventouse (suction) due to his ‘heart rate dropping’. He was born a “happy, healthy and an average size baby”.
But Jodie noticed that Colby was missing the usual milestones.
She said: “Colby was unable to sit unaided until a year old, he couldn’t even hold his head up properly until quite late on. At Colby’s 10-12 month health review was when I first started to discuss my concerns, I was told at this point some babies are just a little lazy, but was referred to physio anyway, who then referred us on to a paediatrician because Colby still had an open posterior fontanelle (soft spot at the back of his skull).”
After going through physical tests, blood tests and an ultrasound, Colby finally underwent a brain and spine MRI scan under sedation.
Jodie said: “Call it mother’s instinct (or my years of working with children and young adults in care including those with CP) I already had the gut feeling from when Colby was a few months old that he had CP. Colby had his MRI in September of 2020 where I had to sign papers to allow the use of oxygen should Colby’s SAT levels drop under sedation. I will never forget it, something like that stays with you - seeing your boy sedated and go through a big machine.”
Colby’s diagnoses officially came in January 2021, after months of chasing the results. He was diagnosed with Pereventricular Leukomalacia – damage to the ventricles of the brain usually caused by a bleed to the brain or oxygen/blood supply being cut off. This is believed to have been caused during Colby’s birth.
Colby was also diagnosed with Spastic Diplegia Cerebral Palsy.
He also has global development delay and has borderline hip dysplasia so has to have annual X-rays.
March was Cerebral Palsy Awareness Month and Jodie has joined those raising awareness.
“Colby still can’t walk unaided at all, and he will be three in May. We have to carry him or use his specialist buggy which we’ve only just recently got. He also has a walking frame which he is trying to get used to but still will mostly walk on the top of his feet/tiptoes. He is awaiting someday splints to help maintain a better foot position.”
The family now have a lot of support or at the referral stage for. Colby also takes medication for pain, spasms and muscle stiffness daily.
She continued: “This doesn’t stop my boy from being the most happiest, cheekiest, cutest boy anyone could ever meet. Everybody falls in love with him and for good reason. He’s come a long way and I’m so proud of him. He is not only my boy, he is my best friend, hero and my CP warrior. I wouldn’t change him for the world. I hope this has brought some attention to the subject of cerebral palsy.”
As well as telling her own story, Jodie is encouraging and helping other parents of children with cerebral palsy.
“I would also like to say to all parents/guardians if you believe something is wrong with your child, please be their advocate and keep putting up a fight against the system as nobody knows your child like you do.
“There isn’t much support in place for parents of children with special educational needs and disabilities (SEND) but things are starting to open up now, there’s a weekly session at Viables I believe as well as The Safe in town.
“I have also set up a WhatsApp group for parents/guardians of SEND children in Basingstoke as I felt there wasn’t much support out there for those with the weight of something like this on their shoulders (please get in contact if you would like details of this).”
Jodie has also thanked Daniel Rolfe from Forever Smiling Charity as thanks to them Colby was able to have a special day out with his parents last year.
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