Thank you so much, the quilt is gorgeous and perfect for Fern's room and snuggling up in her comfy chair. She loves looking at all the pictures, the top mermaid even looks like her.
I didn’t realise the squares were stitched by people from around the world ! Lovely to see the name of each stitcher on the pictures.
Brightens up her hospital bed too.
Thank you very much love from Fern and family! :)
Fern was born a healthy, happy baby. Her growth was slower than her sisters and she was slower to meet milestones but apart from reflux (daily vomiting) and hypermobility we had no concerns. At 2 years she was walking and talking etc but became ill suddenly, constant vomiting and her eyes crossed (strabismus) which gave her double vision. After seeing an eye doctor she had an emergency MRI which showed she had changes in her white matter indicating leukodystrophy. There are hundreds of types so genetic testing was done and the wait for answers was long.
A year later, age 3, Fern had a huge seizure lasting nearly an hour. After this genetic tests came back to diagnose Alexander Disease, a life limiting brain disease which is degenerative, so she would gradually lose all the skills that she’d fought so hard to gain such as walking, talking as well as swallowing and breathing.
Over the years Fern developed well, went to play school, then mainstream, enjoyed other activities such as ballet, gym and horse riding. She had a few seizures which would take her some time to bounce back from, but she always got back to her baseline.
Then, at about 6 years the degenerating began, she had difficulty eating and lost lots of weight. She became very anxious and started having painful muscle spasms. Fern had a feeding tube at 7 years and a g-tube in her tummy at age 8. She stopped eating or drinking for 6 months and then gradually started to have melting foods like chocolate again. She gets all her nutrition from a blended real food diet through her tube. Over the next few years the spasms got worse, she lost head control, the ability to walk, difficulty staying asleep at night, her ability to speak and now is hardly able to move any of her body herself. She’s developed kyphosis and scoliosis that will possibly need surgery before it squashes internal organs and affects things like breathing. Fern's almost lost her ability to cough, so a simple cold is life threatening for her now. She needs lots of machines to help keep her chest/airway clear.
Her seizures have become more frequent, often several every day. She is on a cocktail of medications to keep her as well as we can. Despite all this Fern has kept her sense of humour, she may not be able to speak anymore but understands everything, she’ll often have a giggle at something funny she hears. She has been so brave through so many times of immense pain and scary procedures, she has adapted so well to how her body has changed over the years. We just make the best of every day and concentrate on what she can do and enjoy.