I am a lovely little girl who was born with a very rare combination of heart defects so went to Great Ormond Street Hospital for urgent open heart surgery as soon as I was born.
The 1st of 4 operations was at 3 days old, 3 weeks later I had another but it didn't go well. My heart stopped and for a while no oxygen got to my brain. Mummy said I had to be “cooled” with ice packs for 3-days after that. She says she was very scared but I wasn't, I was determined and brave and eventually I came home. They called me "The Miracle Baby".
My early life was all hospitals and therapy and the good news is that the “cognitive” bit (thinking / understanding) of my brain isn't affected. The bit affected is the “motor” part (doing part). They told Mummy I would never walk or talk but Mummy did lots of research, learning a baby’s brain can repair - build “new routes” to do things if given intensive physical therapy
I’m lucky to have such a bossy, headstrong Mummy who pushed for lots of therapy. With everyone working together I managed to start to walk, to say some words. It was obvious that intellectually I was like any other child and when I turned 4 my Mummy’ found somewhere to help me. We went on a big plane for a long time - all the way to LA. Mummy booked me in a 3 week intensive course at the NAPA Center.
At first I couldn’t walk more than a few metres without falling. I couldn’t run, jump or skip. I could only say about 50 words and often choked on food They told us it may take 3 months to see results from my work but after 10 days I found I could now walk round a shopping centre unaided. I decided to run, jump and even try to skip. I went from saying just 50 words to saying over 170 words.
I returned to NAPA again for a second visit in April 2017 and as a result I am now much stronger with my walking and dexterity. I can walk for far longer periods of time and things like jumping and climbing are now within my grasp. My expressive vocabulary has now increased to almost 2,000 words and I am finally beginning to be able to control my mouth, lips and tongue to speak in sentences. It’s not easy, the days are tiring for me & Mummy.
It’s hard work. Sometimes I cry but Mummy gives me a hug, she tells me it’s all ok, that she's got me, so up I get and on we go. The trips to the NAPA Center are like waving a magic wand for me, it helped me begin to live life in a more able bodied way.
I have since returned in November 2017 and in April 2018. This 'Therapy Life' is part of who I am. I need to go regularly if I am to can get stronger - my Mummy is keen to raise awareness of how these intensive therapies can help children like me - if you can help me or help my Mummy raise awareness and/or funds please do get in touch.