I love my daughter more than anything else in this world. I have been shown nothing but love from my friends and family and even strangers and I can't explain how much that means. But every time I get asked that question….. “How's your daughter doing? Is she getting better?” My heart tears in two because I know she has so much going on and I can't even begin to explain it all never mind the fact it would kill me repeating what she has dealt with and is still dealing with, so I just say “she’s getting there slowly” and smile.
I can’t tell you how many nights I have cried while praying for the strength to keep going and then I look at my daughter and she has been fighting and beating every odd put against her so how can I not continue to be even half as strong as her.
So here is Aaliya’s story…………..xx
Aaliya was born at 24 weeks gestation – way too soon to even have a chance to develop. The Dr’s told us as she is right on the cusp of being viable if she wasn’t taking any breaths when she was delivered then they couldn’t save her. Thankfully for us, she took 5 independent breaths before being put on a ventilator and whisked off to the NICU.
(she was a fighter from the start)
So there was no holding her or skin to skin as most parents get just us seeing her incubator being rushed away and us praying for her to be ok.
And as our first child, we had no idea what to expect, all we knew was that the plastic box she was in was keeping our baby alive and we had to put our trust in the medical professionals. This led us to spend the first 10 months of Aaliya’s life in a hospital as we watched her fight to survive:
•Grade 2/3 brain bleeds,
•NEC (leaving her with a 1/4 of her bowels)
•Broken arm & leg
•17 blood transfusions
and to top that all off she had a potassium burn on her arm due to a mistake made by a nurse.
(1st time holding Aaliya while the nurse changed the sheets)
(When she put on a 1kg just from all the medicine they gave her to try keep her alive)
(after her operation, learning how to deal with a stoma-bag)
For me, this was made even worse as she was born in Leicester and I Lived and worked in Birmingham. So after quitting my job and relying on what I had saved up to start my business and my family and some close friends I made nearly daily commutes to and from the hospital so much so I don't even remember the journeys I'd just know I'd arrived back at home or the hospital, in those months I had driven more than 20,000 miles :/
I also spent days and even weeks living out of my car, and my sleeping arrangements were the biggest hospital chair I could find lol. Yes sometimes we were fortunate to be given a bedroom to spend a few nights in each time Aaliya had major surgery or something serious had happened, but there was only one single bed so yano.
Anyway so after 10 months of a rollercoaster of emotions Aaliya was discharged, and we were naïve in thinking that this was the day our nightmare was over; little did we know the worst was yet to come
So fast forward the 4 years……………..
Aaliya today at 4 years old is happy, full of determination and drive and courage…...
But I would be remiss to say she is thriving. So the list of things our daughter has been diagnosed with which I can never bear to tell people every time I am asked how is Aaliya is doing is;
•Ataxic Cerebral Palsy – which affects her balance and coordination
•Optic Nerve Atrophy, Nystagmus and Strabismus – leaving her with limited vision and zero-depth perception
•Global Developmental Delay – generally delayed in speech and language, mobility, cognitive function etc
•A rare genetic brain condition called Pontocerebellar Hypoplasia – this can cause degeneration of the brainstem ultimately leading to death in childhood.
Despite all the above Aaliya is fighting, she is determined, and we promised her that if she continues to fight, we will be right there fighting with her. But as she is getting older it is getting more difficult to keep up with what will help her. There is no cure to the things Aaliya has been diagnosed with however there is a vast amount of Early Intervention Treatment and therapy that can aid in Aaliya’s long term prospects. This treatment comes at a hefty financial cost, one we simply cannot provide without your support. Early intervention before Aaliya turns 5 will help her catch up and make significant progress with her cognitive, social and emotional skills.
Aaliya requires constant 1-2-1 supervision due to her cerebral palsy and vision impairment.
(When she lost balance cut her head on the gate)
Aaliya requires weekly physiotherapy, occupational therapy and speech & language therapy, as well as intensive specialised physiotherapy at least twice a year. To be able to provide Aaliya with regular early intervention therapy support will cost us £20,000+ as unfortunately, the NHS trust can only provide these services for her once every 2 months, which is nowhere near enough for Aaliya to be given a chance to develop alongside her peers.
As well as all the different types of equipment Aaliya needs and can benefit from that is either is not given by the NHS or has a long waiting list for she also needs to wear a full-body splint to provide her with stability which will help her to stand up unaided. Unfortunately, the NHS does not provide any funding for this either and it costs £2,500 per year.
As Aaliya has Ataxic Cerebral Palsy and Pontocerebellar Hypoplasia she would greatly benefit from Stem Cell treatment at £50,000+.
We just want to give our daughter a chance to live.
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