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Laura’s Story

“From the moment Ethan arrived,” Laura remembers, “we were in love with our perfect little boy. But within a couple of weeks, the doctor noticed his tummy was larger than normal. An ultrasound showed he had large kidneys. They sent him to a specialist hospital where he was diagnosed with ARPKD.”

ARPKD affects one baby in every 20,000, and it causes extremely serious breathing problems. Tragically, about one baby in three with ARPKD doesn’t live longer than just four weeks.

How could this be happening? How could she ever say goodbye to her perfect little boy?

These thoughts were racing through Laura’s mind, when I spoke to her. She had contacted the PKD Charity, looking for help.I explained to her that yes, ARPKD is a serious disease. But there is hope. Eight to nine in ten babies who survive their first four weeks, live to the age of five – and many are now living much longer to adulthood.

Please will you give a gift and help us provide support to families affected by PKD, who are numb with shock like Laura and fearing the worst? You see, after their child is diagnosed with ARPKD, far too many parents are still being told to “just go on the internet and look it up”.

But with your gift, you could help us offer support and information to more parents like Laura.

 “The first two years of Ethan’s life were so hard, most of his life was spent in hospital, with infections, feeding problems and high blood pressure. He ended up having a kidney removed when he was just six months old. Then he was put on the list for a kidney and liver transplant. We were waiting for three and a half long years.

“Eventually, we got the call that changed our lives forever. We have organs for Ethan! I will never forget that day. The transplant was a success and slowly he gained his strength. Now he’s a strong, intelligent, caring little boy who’s living life to the max!”

“We’ve gone to three ARPKD Family Days, organised by the PKD Charity. It’s amazing to meet specialists and get to know other families who are facing the same thing. We’ve made lifelong friends.”

We need your help to support families affected by PKD, will you consider giving a gift today?

Wishing you and your loved ones a Merry Christmas and Happy New Year,

Tess Harris
CEO

PS: Christmas is a time for families. We can only be there for children like Ethan and their families with your help, so please will you consider giving a gift this Christmas?

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PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit The Information Standard website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website