Our daughter, Isabella, is an identical twin and was born prematurely at 31 weeks gestation. She weighed a tiny 4lb 3oz at birth and required CPAP to assist with her breathing. She also struggled with weight gain and needed a Long Line procedure to help with this. After 35 days in the NICU at Broomfield Hospital she was discharged.
Over the next year, we noticed that Isabella was missing milestones. There was a drastic difference in her mobility in comparison to her twin sister, Scarlett. Her consultant at Broomfield Hospital discharged Scarlett, but Isabella has remained in his clinic. When she was 11 months old, she was referred to see a physiotherapist who we saw monthly. With the help of the physiotherapist, Isabella can now sit unaided but is very unsteady. She has also learnt to crawl but glides her legs as she can not lift them. At 22 months old, Isabella had an MRI scan done on her brain and spine. The results showed that she has Periventricular leukomalacia (PVL) and a smaller Thalamus which is a type of brain injury. This confirmed the diagnosis of Spastic Diplegia, a form of Cerebral Palsy.
Spastic Diplegia is a chronic neuromuscular condition that causes tightness in the legs resulting in mobility difficulties. The muscles become very stiff and therefore require extensive physiotherapy. For Isabella to walk unaided she needs SDR surgery.
Selective Dorsal Rhizotomy (SDR) is a surgery that has been pioneered by a Doctor in St Louis Children’s Hospital in the USA. By having this surgery, it will release the spasticity which causes muscle tightness and enable Isabella to walk. The NHS do not fund this surgery which means we need to fundraise. The total amount raised will enable us to fly her to America to have the surgery performed by the doctor who developed SDR. It will also cover the extensive private physiotherapy needed after the surgery and specialist home equipment.
Isabella is a very happy and cheeky little girl. She has so much determination to walk and she just wants to be able to run and play with her siblings with ease. As a parent, it is very distressing to have to sit back and watch her struggle on a daily basis. We have made Isabella a promise to grant her of her wish to walk.
For more information on Isabella’s progress, follow her facebook page.