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Cerebral Palsy Is Leo's Superpower... What's Yours?

25/11/2016 14:30 | Updated 26 November 2016

Imagine spending hours in labour and then giving birth to your first child. Watching your child grow and adjusting your life as a mum when in all honesty you have just reached adulthood and haven't a clue. Now imagine thinking that something isn't right?

The beginning

My sister Joanne found out she was pregnant when she was 17. I remember feeling really excited at expecting a new niece or nephew. The greatest thing was both my sisters were pregnant at the same time, and due within a couple of weeks of each other. So not only was I going to meet 1 niece or nephew but I was going to meet 2. I was 15 and already had 2 nephews. My sister wasn't the brightest spark and we all used to have great fun trying to wind her up.

Jo's pregnancy was pretty much straight forward apart from a bleed at 29weeks which meant she needed steroid injections in case for early birth. Baby hung in there and Jo ended up going 2 weeks over due and need inducing. The birth wasn't straight forward at all, baby's heart rate was falling, Jo's was increasing and the midwives became concerned. Eventually Jo delivered a healthy 6lb15 bouncing baby boy named Leo. 9 days later my eldest sister Tasha gave birth to a beautiful 9lb 1oz baby girl, Elizabeth.

Growing up

Jo adjusted to being a mum really well but as Leo grew older she started to notice little things. The main one being he wasn't sitting unaided, other children his age were but he wasn't. Jo spoke to health visitors who explained it was normal for children to develop at their own pace. If he wasn't sitting unaided by 12* months then they will be concerned. Leo reached a year and he was still not sitting unaided so Jo took him back and they ran tests. Meanwhile she did her own research and figured it was a hip problem and he may need to wear leg casts.

At 14 months old Jo received a letter inviting her to a meeting with Leo's doctor, a physiotherapist and social services. She rang and spoke to a lady. Jo wanted to know why social services were involved, did they think she had something to do with it? The lady said "it is usual for Social services to be involved in a diagnoses of Cerebral palsy". Taken aback Jo said "but Leo doesn't have cerebral palsy". The woman simply said "that is not what is written here, it says Diagnosis - Cerebral Palsy". That was that. Leo aged 14 months old now had cerebral palsy and none of us knew a thing about it, especially Joanne.

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Life after diagnosis

Jo and Leo lives revolved around doctors appointments, hospital appointments, Physiotherapists, occupational therapists and more. Pretty much every week there was an appointment of sorts. Leo was soon diagnosed with Spastic Diplegia a form of cerebral palsy. His muscles are tense and they spasm. His legs become tight and his joints will stiffen causing him pain. It is a milder form of cerebral palsy and it doesn't affect Leo's cognitive behaviour, although milestones are reached a little later than his peers. Jo was told by doctors that Leo may not walk independently, if he does it will deteriorate and he will become wheelchair dependent.

Jo soon realised what this meant. It meant Leo would probably never be able to play outside with friends, something growing up kids do! Leo would probably never ride a bike or play on a scooter. He would struggle to go from room to room let alone climb stairs. There are so many things that with this diagnosis leo would really struggle with and that was something that hit us all hard. Especially Jo. 

Jo didn't want to accept what the doctors told her. She soon came upon an operation that could change the entire outlook on Leo's life. Selective Dorsal Rhizotomy is a life changing operation that could completely alter Leo's life. Here was an opportunity that Jo had to take! It took months of fundraising trying to reach a target of £50,000 to fly him over to the States. The date came round sooner than we the thought.

6 years this year since Leo's operation and he is walking unaided, he is playing football and he has just ran his second SECOND 5km fun run. None of this would have been possible if Jo didn't look into how she could make Leo's life more comfortable for him.

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Imagine being told your beautiful baby boy is going to become wheelchair reliant what would you do? Would you accept this diagnosis? Or would you try and find a cure? If not a cure then something that would postpone the inevitable for as long as possible?

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