A party is being organised for a Darwen woman, with a rare genetic condition, who has been told by doctors that she may not live to see Christmas day.
Kia Shaw, 26, was born with Shwachman-Diamond Syndrome (SDS), which affects the pancreas, bone marrow and other parts of the body.
SDS can increase the risk of developing acute myeloid leukaemia (AML) and myelodysplastic syndrome (MDS), a type of rare blood cancer where you don't have enough healthy blood cells.
Four weeks ago, doctors told Kia she now has MDS and this will lead to AML. She was told she only has a few months to live.
Kia is set to undergo an experimental treatment aimed at “restarting” her immune system, in the hopes it will eradicate the leukaemia. Manchester Hospital haematologists, Fiona Dignan and Robert Wynn, will be leading the treatment.
Her family is also organising an early Christmas party for Kia and a GoFundMe page has been set up on behalf of the family.
Mum, Carol Halligan, said: “I knew something was wrong because she had been having other symptoms over the last few years, but I thought she was just running an autoimmune disease alongside her conditions.
“We just weren’t prepared for what we were told by doctors. We were in shock at the beginning and we all cried.
"We were told it was a lot to take in and to go away as a family and have a chat.
“I said to doctors, ‘you either find something or I will find something’ but I won’t accept [having no answers].
“She has spent the best part of 15 years in and out of hospital just fighting to stay alive.
"She has social anxiety because she’s never been around people. She’s only just started being who she is in the last few years and it has been taken away again.”
Kia is set to undergo treatment in the coming weeks, using stem cells from umbilical cords.
Carol said: “We’ve had to be honest with Kia because what they have proposed is a complete shot in the dark.
"They are going to do a ‘re-transplant’ using stem cells from a baby’s umbilical cord to restart her immune system.
“Doctors were honest with Kia. They said this was not easy and people could choose to spend what time they had left with family and friends.
“Kia said she was going to fight because she didn’t want to die and she is going to fight to survive. She is a tough cookie.”
Doctors have however said Kia may not live to see Christmas.
Carol said: “She said she just wants Christmas at home and then she will do the transplant.
"Doctors said she couldn’t have Christmas at home because she does not have that much time left. We thought she would have a few years but they told us it is only a few months.
“She said she wanted Christmas and asked if we could put the decorations up – now they are up in October.
"The trick-or-treaters are going to have a shock when they come to our door and get a selection box!”
Kia’s brother, Brayden Shaw, is organising a winter wonderland-themed party at Darwen Football Club on November 9.
He said: “I am blown away by the things he has already managed to create for her. Everybody is coming together and helping.
“We think it will be a magical day if we can pull it off. We want it to be one of the best Christmases she will remember.
“I am blown away by the generosity of the people around us and I can’t thank people enough for their support. In the darkest times, we can feel the love and support from people’s kindness.”
The family has thanked Darwen FC, Lads United who have raised £500 and supported the family, The Grey Mare pub in Belthorn which has “gone above and beyond”, and other businesses for their help.
They are still appealing for some items for the party, including electric heaters and a marquee.
Carol added: “Darwen FC has backed Brayden and said they would help him create this.
"The plan is to use the pitch because there won’t be enough room inside but we need a marquee, heated lamps and other things.”
A GoFundMe has also been launched by Kia’s friend, Chloe Ardis. The money will be used for family days out and hospital trips. More than £2,000 has been raised so far.
To donate to the fundraiser visit GoFundMe and search for ‘Kia shaw’s fight for life’.
Items still the family wants for the party include: a large marquee, buffet food, a DJ, singer, fireworks, heated lamps, balloons, Christmas decorations, disco lights, raffle prizes, a snow machine, speakers, a magic mirror photobooth, extra seating.
If you want to donate services or items to the party contact Brayden at: braydenshaw97@gmail.com or call 07399 458969.
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