Two-year-old Cavan is an energetic, playful, happy and intelligent little two-year-old.
But in October 2013 Cavan was diagnosed with Spastic Diplegia, a specific kind of Cerebral Palsy that mainly affects his legs due to tight muscle tone and spasticity which makes it difficult for him to walk.
Cavan’s parents, Emma and Diarmuid O’Neill began their campaign Cavan’s First Steps in late October 2015 with a target of £80,000. Today they have raised in excess of £50,000.
Emma tells about their incredible fundraising efforts so far; how touched she and Diarmuid have been at all the local support and just how much the life-changing surgery would mean for little Cavan and their family.
Is it right that you had suspected Cavan may have had Cerebral Palsy before he was diagnosed?
Doctors hate us googling things but I had been doing it since Cavan was about eight months and kept coming back to the same thing, Cerebral Palsy. I’d a further 10 months from he was diagnosed to almost prepare myself but I still believed I could be wrong, this doesn’t happen to me. I have never had any encounter with disability.
I remember being told and looking at Cavan while he played on the mat and thinking how tough his life would be. That was my biggest concern, the challenges he would face, not what we had to do…
How does this condition affect Cavan’s life?
Cavan can only crawl so all outside activities mean he’s mostly strapped in his buggy and he gets frustrated and wants to join in with other children but can’t. It’s constant lifting in and out of seats, pram, swings or just letting him crawl on the floor and going full on with sanitiser afterwards!
He is a happy child but there are times when I can see it in his face that he knows he’s different and that breaks my heart.
We are about to start potty training and we’ve no idea how that will work given he can’t position himself onto a potty but we want to make life as inclusive as possible for him.
Night times are hard as the tightness means he wakes up regularly and we have to stretch him. During growth spurts, that’s the toughest. One night I counted 12 times we had to get up. I don’t even know how that was possible in just 10 hours!
He will begin mainstream nursery in September and I know that will be a challenge. Cavan is on the same level as typical kids in relation to intellect and speech so we feel mainstream is best and we’ll deal with the mobility issues when they arise.
We do know that there will come a day when he will ask why he’s different and we know it’ll be emotional…
You seem like such a loving, tight-knit little family. He must be an inspiration to you both as parents?
He is! He’s our only child and we know no different. We have the most gorgeous conversations with him and we just feel blessed to have him. He’s definitely the best thing that’s happened to us and we know there are parents out there who have a lot more challenges so we are grateful.
At Cavan’s age, he’s probably a typical toddler keen to play with friends and participate. Do you find his condition impacting him more now as he grows older?
Yes, definitely. Unless there is floor play, Cavan relies on adult assistance to get around. Particular days out are a no go for us. Birthday parties are tough as we can’t sit back and enjoy watching him play as much as he’d love to have him be independent.
How much would the pioneering spinal surgery mean to Cavan and your family?
We’ve been watching over 40 families around the world who have been through this. We keep in touch online, we see the benefits through their little videos posted everyday. We see these children go from crawling to walking up the stairs using no hands and even playing sports and cycling.
This would be a dream for us and would dramatically change our lives for the better but most importantly we know Cavan would be just so happy to have those abilities. We got him to stand recently leaning on a table and I’ll always remember the pride in his face.
Could you outline for us the health benefits little Cavan will gain?
The surgery will cut misfiring signals from Cavan’s brain to his legs – signals that are making him very tight and preventing him from walking. These incorrect signals will be permanently severed through spinal surgery. Instantly all pain will be gone, the muscles will be revealed and will be weak initially but we will spend hours working on them to built them up to get him to stand then walk.
His balance will improve, pain will be gone and mobility greatly increased. It’s life changing.
You’ve deservedly received overwhelming support – with just over £50k of your £80k needed for the treatment raised already! How touched are you by all the local support?
I cry all the time. I’m an emotional wreck ha ha! I’ve got a renewed faith in humanity. People I barely know to complete strangers have just floored me with their generosity while those close to me have upped the ante and been like a rock throughout all of this. There are good people out there and few people get to experience that.
Do you have any big fundraising plans over the coming months?
Yes, we have our gala ball on June 4, opened to everyone. We are hoping that event will mark the day when we can book the surgery. Tickets cost £50 per head and are available from the Devenish Complex.