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Hi my name is Amanda and I am trying to raise funds for my 4 year old daughter.
At 2 months old Hallie was rushed to hospital with heart failure, this is when we found out she has extremely complex needs, epilepsy, dystonia, complex damage to the brain, global developmental delay. These are just a few there are many more.
In December Hallie very suddenly got extremely sick, she was intubated and transferred to the PICU at Glasgow Children's hospital. She was there for a month, during her stay she had 5 surgeries including a skin graft. She very nearly had her foot amputated due to necrotising fasciitis caused by strep C. Unfortunately, because her immune system is so weak a viral infection most people don't even realise they have nearly took my baby girl from me.
Sadly, Hallie was intubated again in April due to pneumonia and spent another month in their PICU. It was during this time that we were informed that Hallie has type 2 respiratory failure. And her life is severely limited due to this.
The more she is intubated the less likely she will be able to come off the vent. At this point I'm just trying to keep my daughter healthy and out of hospital.
This has devastated our whole family but we are just trying to do our best by Hallie. Unfortunately the NHS can't supply everything that Hallie needs for the house and as its medical equipment it's more than we can afford to buy outright.
Our first priorities at the moment are;
- A new oximeter and sensors to monitor her O2, heart rate and respiratory rate, as Hallie can desaturate very quickly and it is not always possible to tell just by looking at her that she is struggling. Her old oximeter unfortunately is very temperamental and doesn't work all the time, but it has saved her life twice so it is an invaluable piece of equipment.
- the 2nd is a Bair Hugger or some other system to raise or cool Hallie's Temperature quickly. The part of Hallie's brain that controls temperature is damaged, she can over heat which causes dystonic storms and tonic clonic seizures, both of which are dangerous for her. She can also go hypothermic, which decreases her breathing and heart rate.
We have never asked anyone for help with Hallie, we provide 100% of her care and I've been trained to do medical procedures I wish I never had the need for.
I don’t want to have to take my daughter to the hospital and have the Drs ask how much effort we want them to put into saving Hallie (been asked 5 times in 4 months).
Any help you could give Hallie would mean the world to me and my family.
Thank you for taking the time to read this.
Organizer
Amanda Hollywood
Organizer