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  1. Lilyfae

    Wow. Things like this are hard but hopeful memories for the parents too. Reminding of the bad times, how far you’ve come and how further still you have to climb.
    My daughters have undiagnosed short stature (no recognised dwarfism or similar genes) and autoimmune hypothyroidism. We would never have known my eldest had it unless my youngest hadn’t have had a high Nuchal food at the 13 week scan kicking off test after test after test that all came back fine just small, fine just small etc. But we’ve been through so much testing since November 2015 including days in hospital and painful ones i sometimes feel my 6 year old is going to crack, yet she fights on.
    Like you must be in in awe of the resilience and utter fight that is in children to keep keeping on. You are doing so well to keep on yourself too x #MMBC

  2. sam

    Gosh, I can’t imagine what it must of been like, I can totally get the anxiety, I think anyone would be in your situation. You sound amazing parent Anne, you can onlu do what you can do which is hard for a parent. I am autistic though I do not have physical condition I can understand frustration when you have drawbacks as a parent because you want to do the best for your child. X #abitofevetrything

    • Anne Sweet

      It is really difficult sometimes, but thankfully she doesn’t have to go to hospital too frequently now. It’s strange going to see the same Drs we’ve seen for years and turning up in my wheelchair now.
      xx

  3. Kirsty Hall

    It is so impossible waiting for them to return from theatre. It sounds like you and your daughter have been through it. You are clearly both very strong people. Thanks for sharing with the #DreamTeam

  4. Mrs A

    Wow, you’ve been through a lot as a family medically. It’s a testiment to your patenting that Star was able to get through her surgeries and treatment as qell as she did.
    #abitofeverything

  5. Fiona Anderson

    As someone who had a full spinal fusion at age 14 for severe scoliosis, caused by a rare progressive neuromuscular condition – I sadly know all too well what you went through as a family. Traction is very difficult but it sounds like you as a family adapted well to the changing circumstances. Has Star received an official diagnosis since you wrote this? #ItsOK

    • Anne Sweet

      Hi Fiona, We won’t know for sure whether she has Marfan Syndrome or another type of EDS until her results come back. We were told this would not be until at least August, so it’s at the back of my mind for now. She certainly has a connective tissue disorder of some kind. She has mild scoliosis so I’m hoping there won’t be any need for any more operations. It sounds like life hasn’t been easy for you but I admire how you cope so well. x

  6. MomOfTwoLittleGirls

    Oh wow. That is a true story of how resilient kids can be, how amazing their inner strength is, and in turn how much us as parents go through. You are amazing! She is amazing. Fingers crossed you get a final diagnosis soon.
    Thanks for linking up to the #ItsOK Linky

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