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Family struck twice with extremely rare fatal condition

  • NG tube free

      28 December 2023
    Posted by: Lisa Jessop

    Grace had surgery just before Christmas, she is still having random vomiting post feeds. Health wise has been at staying about the same. She needs 100% support for everything now. She has a little new wheelchair as trial. Will be looking into getting a van in the new year, as I have a bad back and the wheelchair is quite heavy.

    This page ends on the 31st, so a few days left of this page. Want to thank everyone who has donated and supported Grace

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  • Grace Update

      1 October 2023
    Posted by: Lisa Jessop

    Grace is on an experimental medication to “help” control her seizures (this is funded). Grace only so far seizures while asleep, which is a huge concern. I’m having to constantly watch her.

    Grace has lost some weight in the last month, her feeding intake has decreased a lot. Drinking water is becoming an issue.

    Grace will be getting a NG feeding tube (nose) this month, before her 2nd birthday. Her paediatric doctor and starship neurologist, are trying to book her in for a mic-key (stomach) surgery early next year.

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  • Update on Grace

      10 August 2023
    Posted by: Lisa Jessop

    Thank you everyone for the donations so far, means a lot to my family and I.

    We want to make as much memories as we can for Grace.

    Grace has now having trouble with grabbing items, which means she can no longer self feed herself and relies on me to help give her food. I’ve also noticed she starting to lose some head control as well. Everything is happening more quickly with Grace than Anita, which is quite scary and concerning.

    Grace has an upcoming StarShip specialist appointment again, these happen monthly with different specialists each time.

    Grace has been in and out of hospital with viral infections which keep setting her backwards.

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  • Update on Grace

      4 July 2023
    Posted by: Lisa Jessop

    Grace has now started to decline in development, she has now stopped sitting on her own and falling over. She has also stopped trying to crawl, it seems too hard for her to get back on her hands and knees.

    Grace has had an EEG and she is showing ongoing seizure activity and now has to start anti epileptic medication at 20 months.

    Graces older sister Anita didn’t decline or start seizure medication until she was 2.5y.

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