My Super Legs - “ I am only Four, why are my Legs so Sore? ”
Hi there, my name is Erin Caitlin Jones, and I’m 4 years old. I’m different to the other girls & boys in my class because I have Cerebral Palsy (Spastic Diplegia). I wear leg splints, I have a wheel chair, I wear glasses.... and they are all PINK!
I live in Cardiff with my twin brother Cai (who likes trains) and my Mummy & Daddy.
When the doctor fixes my legs I will have ‘Super leg’s’.
My family has setting up a fundraising page for me through Tree of Hope in order to raise essential money for an operation that I need to take away the spasticity in my legs. The operation is called (SDR) Selective Dorsal Rhizotomy. After my operation, I will be pain free and my muscles will be free of the tightness that causes my pain. However, I will need intensive physiotherapy immediately post-op, and for up to 24 months.
I had my operation in Bristol on 10th April 2015 but we still need to raise money for essential aftercare that the NHS does not fund:
£10,000 for the intensive physiotherapy, and strength training (for up to 24 months afterwards)
£5,000 for specially adapted exercise equipment (treadmill, bike etc.)
Elusen Jac Bach Charity are helping us achieve this and my family will continue to self-fund and raise money for all other equipment and appointments needed.
Erin is one of the most incredible, determined, beautiful, creative and loving little girls you will ever have the pleasure to meet. We feel blessed to be her parents as she inspires us to try harder every day. Erin has started primary school, and has a 1-2-1 support to help her. She loves school and has made many new friends. Now she wants her Super Legs so that she can run, dance and play with all of her friends. Erin was diagnosed with Cerebral Palsy during October 2011.
For over 3 years now we have been going to the Hospital – meeting surgeons, doctors, physios etc. We’re very grateful for everyone’s care for Erin. However, we’ve got to the point that Erin is continually suffering – her lack of mobility, the pain she endures and the psychological impact of her knowing she’s different to the other children. As parents, this is heartbreaking for us to watch and to live out every day. We have to do something now to help Erin.
Erin had her operation on 10th April 2015 at the Bristol Children's Hospital.
Cerebral palsy is an incurable neurological condition, which affects motor functions to varying degrees in patients. Children with cerebral palsy can have difficulties in controlling muscles and experience tightness (spasticity) and painful muscle spasms.
Although cerebral palsy is not progressive, the affects of spasticity on joints and muscles invariably results in painful contractures, surgery and reduced mobility later in life. Many children face a future in a wheelchair: http://www.support4sdrwales.org.uk/about.html
What Needs To Be Done To Help Erin?
“Selective Dorsal Rhizotomy” or SDR is neurosurgery carried out to remove spasticity in patients with certain types of cerebral palsy. Patients are primarily children, but adults have also undergone this surgery.
The aftercare from her operation involves continuous hard work and Erin will need to regain her strength and build muscle to replace the tightness that will be taken away.
Exercise will become part of Erin’s life, for the rest of her life.
To understand more about the operation please visit The St.Louis Children’s Hospital website http://www.stlouischildrens.org/our-services/center-cerebral-palsy-spasticity/about-selective-dorsal-rhizotomy-sdr
We will also be holding numerous fundraising activities over the coming months. If you have any ideas or suggestions, or would like to get involved, please get in touch.
Thank you from the bottom of our hearts for taking time to read Erin’s story.
Love The Jones Family xx