Just4Children are raising funds for Robyn to receive life long therapy including intensive physio sessions and specialist equipment as well as adaptations to the home to support Robyn and encourage her to become as independent as possible.
Robyn is a happy, sassy, cheeky 4 year old from Basingstoke. She has Spastic Diplegia of the lower limbs and dreams of walking, jumping and hopping independently!
Robyn was born at 31 weeks and 3 days with me unknowingly contracting Group B Strep and waters breaking at 30 weeks. Robyn came out fighting from the get go. However, it was later disclosed that she had contracted Sepsis. She spent 5-6weeks in NICU. Each week we moved up a room closer to the door to home. We were so proud of our little premmie superhero and the fighter she already was at a diddy 3lbs 14oz. Yet, we were blissfully unaware of what the future was going to look like for her and us.
At around 18 months, Robyn was still not walking so a call to the Health Visitor was made where we raised our concerns. We were advised she was doing great and just needed that little bit of extra catching up time. I pushed for an appointment to be made with a paediatrician and physio where I questioned if Robyn had Cerebral Palsy based on certain things she would do and the dreaded google searches. A month before Robyn’s 2nd birthday, she was diagnosed with Spastic Diplegia of the lower limbs and it came to light that an MRI Scan that had been carried out during her stay in NICU was never disclosed and she had in fact suffered a bleed on the brain either during or straight after birth. Our world fell apart.
Roll on a couple of years and Robyn is still as eager and determined as she was the day she arrived.
Keeping the promise we made to our beautiful, clever and happy little girl, we started private physio, hydro and strength and conditioning therapies. She has made amazing progress and continues to surprise us, making us burst with pride daily. She will forever be my hero!
However, Robyn’s life is not like an average child’s and without these therapies, endless appointments and routine scans/checks; her mobility will deteriorate.
We are currently on the NHS waiting list to see if Robyn can qualify for SDR Surgery (Selective Dorsal Rhizotomy). A potentially life changing surgery where the nerves in the spinal canal are cut to stop the abnormal messages being sent to the muscles. Encouraging and enhancing independent walking and quality of life in children with CP.
We are raising money for Just4Children to help provide Robyn with intensive therapies and equipment as well as making the necessary adaptations at home to help her be as independent as possible. Our current dream is to endure a week’s worth of intense therapy at SwimLab. Children who endure intensive therapy sessions such as 3 hours a day for a whole week are the ones that get the best results.
Robyn will need therapy for the rest of her life regardless of surgery, to reach a level of ability to have as happy and as independent life as she possibly can.
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