Just4Children are fundraising to provide Mahi with specialist therapy and treatment so that her quality of life will be dramatically improved.
Hi there, I am Mahi! I am 15 years old from Mitcham and I have Cerebral Palsy which affects all of my limbs, Nystagmus, and some learning delay.
I wanted to write my story for my parents to share with you. My mum had a normal pregnancy and no problems to report. She then went 9 days over as I guess I was comfortable there before irregular contractions happened. The hospital planned on inducing my mum but my heart rate dropped and I had to be delivered by emergency caesarean.
There were delays in my delivery that the hospital would not admit, but at some point before I was delivered my heartrate came up and that is the reason I am here today, otherwise I would have been stillborn. I was in a very poor condition and was in NCU for 11 days before being allowed home. I did not hit my milestones and at 18 months old I was diagnosed with Cerebral Palsy.
My parents were told I would not talk, walk, feed myself, nor have learning capacity. My mum left her career and took me to India for intensive physiotherapy, coming back to the UK in between visa renewals, whilst dad worked to keep us going financially. I slowly learnt to sit, weight bear and walk which took 3 years. I started talking at 3 ½ years old in Gujarati as that was what I was mainly exposed to! At 5 years old I had to start school here and it was hard as no one understood me and I had to learn English. My mum taught my 1-1 some Gujarati words so she would know what I was talking about.
I was small and was able to get around without equipment for a while and we thought I would be OK. But as I grew taller my legs became weaker. Fast forward to 10 years old and my legs started to tighten up. I began to walk more couched even with AFO’s and night splints. NHS Physio resources are not easily available so my mum was and still is my physio and carer, but even she couldn’t stop what was happening.
Covid hit and everything shut down and I grew very quickly being stuck at home with home schooling. I go to a Special School), and all hospital appointments being cancelled did not help. My mobility and strength regressed and my legs are now very tight and I can not straighten them. I now rely on my wheelchair, I can not walk a short distance outside alone in case my bent legs want to take me off in a different direction to where I want to go. I have a walker but it hurts my back, shoulders and legs as I have to push hard to keep upright. At home I am high kneeling on my knees as I am so tired after school and in constant pain trying to get around. Weekends are for rest and recovery.
I have been told I can have an operation at The Evelina Hospital in London that would ‘break’ my legs, reposition my kneecaps and leg bones, lengthen and shorten tendons around my knees and lengthen my hamstrings. I would then have my legs in straight casts for 2-3 months which means my leg muscles will be even weaker than ever. I then have to have intensive physiotherapy and hydrotherapy for a few years to get me standing and walking again. We are aiming to do the operation after my GCSE’S.
My parents and I are wanting to raise funds for Just4Children to provide my therapies and adaptions as it will cost a lot to do. I am even prepared to Skydive with my Dad to raise funds if I am allowed too.
Thank you for reading and I hope you will donate to get me up and walking better again.
Big hugs and lots of love to you all,
Mahi x
