Macey's quilt   (Quilt Completed) |
Born: | June 2014 |
Illness: | Lissencephally, Lennox Gastute Syndrome, Cerebral Palsy and Rhabdomyosarcoma
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Theme: Disney characters - all
Quilt delivered: 22nd May 2023 |
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Thank youMaceys quilt has arrived and it is absolutely stunning!!! It is everything she loves all in one place. Thank you so so so much!!
My mum and I were in tears looking at all the detail. I can’t believe how lucky macey is to have something so beautiful.
Miss Macey has had a massive day in hospital today, and is completely zonked, but I’ll try and grab some photos of her with the quilt this week and send them through.
Thank you so much once again. I’m so grateful, this will definitely brighten up those long days/weeks in hospital and those horrible seizure days when we are stuck at home.
Have a lovely week! I’ll send some pics very soon!
Love n hugs"
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Finished photos
Quilted by:
Diana
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Individual squares
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Card
Stitched by: Sarah Warrener |
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BiographyMacey was born meeting all her milestones and generally a happy little lady. At 4 months she started having seizures and started to regress with her development. This lead to her diagnosis of Lissencephally, cerebral palsy and multiple seizure disorder. After multiple medications we found the right mix and Macey started thriving again. Full of smiles and loving being around her family and friends.
At the age of 3 Maceys eye began to droop. She had just started another medication for her seizures so we initially thought it was a result of that change. But it wasn’t getting any better and I could start to see a growth in the corner of her eye. After a visit to an eye specialist it was decided she needed an MRI. A day later we knew she had a tumour in her orbit. A biopsy a few days later and we knew it was cancer. Rhabdomyosarcoma.
Macey took on treatment like an absolute champion. As she isn’t verbal and already had so many other issues we weren’t sure how she would recover. But she did. She took on Chemo and although there were a few complications, she kicked cancer to the kerb. After a month of radiation treatment was officially finished. The tumour is still there, but dormant.
Unfortunately chemo has left it’s impact. Macey needs regular scans and reviews, she has monthly transfusions and multiple therapies. All that she gained before cancer was lost. She still isn’t able to eat orally, has lost the ability to sit independently and is completely wheelchair reliant. She is in hospital weekly for appointments and has multiple long stays every year.
But she smiles. She laughs. She loves to be around people and other kids. She shows anyone around her what resilience is.
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