DLA renewal

[Ducks123]

Hi wondering if anyone has had a successful DLA claim for their child post liver transplant? Daughter was born with Biliary atresia and had a liver transplant a year and a half ago.

[Blue2211]

Hi hope you and your daughter is fine. Just want to ask how is she now and how was the transplant journey. Have you already received DLA before transplant?

Thanks

[Ducks123 in reply to Blue2211]

like with any liver transplant it has been such a bumpy ride. My daughter has stricture in one of her bile ducts. She has had 2 Ptc that went horrible wrong. She’s VRE and ended up with sepsis both times. Finally the hospital have acknowledge that sepsis the second time round could have been avoid if they had listened to what I had said and given her the correct pre op antibiotics. That aside my daughter is loving life despite the frequent hospital admissions. Normally due to her reacting badly normal kids bugs making her extremely poorly. My daughter was on highest rate following Kasai but when it was time to renew it was reduced to lowest. My daughters situation hadn’t changed, in fact she was then taking medication 14 times a day by that point. I wrote a mandatory reconsideration letter and then then removed the ward completely. I ended up taking to tribunal. Pretty hard when they asked me to compare her to my other children as my only other child passed away!

[Blue2211 in reply to Ducks123]

Hi Ducks123. So sorry to hear about this lots of prayers for your daughter!