Alexia Rose Sinclair is 6 years old and hasn’t had an easy time since being born. She needs many specialist therapies to help her reach her potential and give her a better quality of life.
Alexia arrived at 28 weeks, unable to breath by herself and weighing 2lb 15oz, a whole 3 months early in June 2013. She spent a couple of months in SCBU and beginning of August 2013 we took her home to start life as a family. But it was short lived as the first 6 days of being home, we had 3 ambulances back to hospital, as Alexia kept stopping breathing. The third time it happened, I thought she was dead, I thought that was it. Thankfully my husband resuscitated her and brought her back but that day changed our lives forever. She turned into such a stiff baby, she struggled to have a bottle without stopping breathing. She struggled to be weaned. She never hit any milestones. And at 9 months old we received the news we were expecting. Alexia had quadriplegic spastic cerebral palsy!
We were told she would never walk, never talk and never do anything. After an MRI we were told her brain on her right side was so damaged she wouldn’t do much at all and that’s when at 9 months old she started conductive education, shortly followed by private physio. Sadly, the NHS could only offer 1 physio session every 6 months, which was nowhere near enough.
In 2016 she started having Epilepsy, all due to her brain damage and over time, sadly it’s become much worse.
In 2016 she also had her first operation to remove a lump on her eye. She also started being put to sleep to have botox injections that same year. In 2017 she underwent a 9 hour operation to have a double hip reconstruction as well as muscle lengthening in her hamstrings. In 2018 we went to America for her to undergo the SDR operation. We knew the SDR was Alexia’s only chance of ever walking. And now 2019, just this next week in October she’s off to Addenbrookes for her hip plates to be removed, as well as her hand muscles lengthened and put in cast.
Her whole life has been physio, appointments, ambulances and hospital stays. and it’s been a tough road. Having said that she now talks alot, she walks beautifully being held or in her walker, she’s learning to use her hands and arms in new ways everyday. She can’t crawl or get around unaided at all but we are working on it every day.
In June 2020 we are off to NAPA in Boston. It’s the best therapy centre in the world and we are excited to see what they can teach us to help Alexia even more, but the therapy alone is $7080 without flights, accommodation and food. We have booked her a week of CME therapy in London in November and we have her weekly therapy and blocks to pay for too which is around £500 a month, plus we take her to Stafford every 6 weeks to the most amazing therapist for 4 days which with accommodation, therapy and transport is around £1000 but on every visit we see the most amazing progress. Every therapy session helps her and she’s changed so much over the years to what she should be.
Alexia is one of the happiest little girls ever and so full of life. She’s an absolute day of sunshine.
I know so many people have already supported us to help her. We really need to keep her in therapy for as long as we can, to help her live a better, more independent life.