Raising Money For Talia


It is with great sadness that I’m writing this, Talia grew her angel wings yesterday she fought so hard but it was just too much. It’s absolutely heartbreaking news a beautiful young lady taken far to soon. I will keep the page open because the family will need help for the funeral and maybe to do something in Talias honour with her siblings. So please keep sharing RIP beautiful Angel. Absolutely heartbreaking for everyone who had the pleasure of knowing you Xx

Thinking of Victoria Lees and all the family at this very sad time Xxx

Talia story was she had been refused transplant in the UK and has been informed that she would be eligible in the USA for treatment but to do this we need to be able to pay for treatment and to get Talia over there.Talia is 14 years old shes had 2 bone marrow transplants at the age of 5 her health has been up and down all of her life and in January 2019 she was diagnosed with pulmonary fibrosis (lung disease) this is due to her underline condition DYSKERATOSIS CONGENITA a genetic condition she was born with. This is a 1 in 1million condition for a boy and 1 in 10million for a girl.

The only cure for this is a lung transplant but this was refused by GOSH last year due to her dyskeratosis congenita. Talia has progressively got worse and has now been admitted into hospital on ICU and is on oxygen. Her dr is going to speak with great ormond street again about potentially having a lung transplant but in the mean time she will be on 4 different drugs to try to slow down the disease in her lungs. There’s no guarantee this will help but it’s worth a try. She will be in hospital for at least 3 weeks, which will have a massive effect on the whole family. When/if Talia will be allowed to go home she will need oxygen and a lot of support at home from her amazing parents. Talia has 3 younger siblings ages 9,7 and 3.

Due to Talias shortness of breath and requiring extra support at home her mum will need to turn the dining room into a bedroom for Talia. Talia will also be off school and need 24/7 care. The machine Talia will require to provide her with sufficient oxygen will need constant electricity which will dramatically increase the electricity bill. As Talia will gradually get worse holidays and days out will become impossible so the family would like to make the most of their time together by going away and taking Talia and her siblings out on day trips to make memories that will live on with her siblings forever.

All this is dependent on when she’s allowed out of hospital as nothing is guaranteed but mum and dad are staying with Talia and sharing the load between being with Talia in hospital and being at home with the younger 3. They are trying to keep life for Talias siblings as normal as possible by taking them out and keeping them occupied this is very important so they don’t become too upset and worried about their big sister and not having their family unit together. Please help by donating what ever you can to help this family make some special memories. Thank you xx
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