mine & Graces story is a long one

I was told i would never have children but i got pregnant during the Covid pandemic. Tragically i suffered a miscarriage, which was heartbreaking and very hard for the whole family to deal with.

However, I became pregnant again i felt blessed but understandably nervous. It was far from an easy pregnancy, with many worrying trips to the hospital due to heavy bleeding and other issues including the baby not growing.

Eventually Grace was born by emergency C-section but was just 4lb10oz & had health issues including struggling to breathe. Instead of being able to hold my new baby in my arms like most mothers, Grace was rushed to Intensive Care and we were then informed that she had a hole in her heart, Gracw had a feeding tube in situ and i just felt useles, i coud not help her.

Grace is such a sweet and cheerful little girl but she suffers greatly from a variety of health issues. She has dysphagia so cannot eat normal food - everything has to be pureed. She requires regular physio and hydrotherapy (she loves the water!) as she struggles with her mobility and cannot walk, sit up, stand or bear weight independently. Along with this and her dietary requirements she also has very sensitive hearing and eyesight. She has also been diagnosed with a brian impairment as her frontal lobes have not developed, which means that she doesn't receive as many signals from her brain resulting in difficulty moving, speaking and expressing herself. In short, she is severely disabled and requires a lot of specialist care, Grace has to have full 24hr care. Grace also suffers from seizures,

Graces Syndrome is life limiting! I hate seeing them words but it is and it breaks my heart as a mum i cant do anything about it

Furthermore, Grace was very close to her grandma who took her to Llandudno in August 2022 for a memorable trip. Tragically, her grandma passed away just a few weeks later, which was a great shock and obviously extremely sad for all the family that was already going through so much,

Grace requires 24 hour attention, I am dedicated to do my absolute best for her. But this is of course extremely challenging and has meant that i devote my entire life to care for her, and try to make Graces life full of memories and give her independence lots of love and cuddles,

The main aim is to raise enough to be able to take her to Disney land, there were four things we wanted to do for grace,

*stair climber - so she doesn’t need to move home due to the stairs

* wheelchair friendly car - so we can just wheel her wheelchair straight into her car, instead of taking her in and out of her wheelchair & car, she does become agitated, id love it were she can just go out with her brother and just enjoy the day

* Ramp for the garden- grace loves the garden and we are trying to make it full of sensory items, flowers, water, etc a place she can enjoy with her brother

* take Grace to Disney land- to make memories as a family while we can, Grace loves Disney

I have used the very last bit of my life savings on making memories for Grace and further funds would be needed to help make everything come to fruition also to make life a little easier for Grace who is doing her very best against all the odds.

Grace has a very very rare syndrome called NAA10 Ogden syndrome, Grace is 1 in 11 million !!! There is only 120 confirmed cases world wide, Graces sy is life limiting 🥺😢😭

Thank you for reading this and hopefully you can help us raise the money Grace needs. please support our beautiful special little girl we truly are great full for your time xx