July 26 2014 Latest news:
By Joe Wilkes
Friday, November 30, 2012
The family of a three-year-old girl with a rare life threatening condition urgently need to raise £40,000 to transform their home.
Willow Freeman has intestinal failure. Her body does not absorb food like the rest of us and two hours after every meal or drink she feels debilitating pain, and her mother has to drain her stomach. Her life is made up of treatments, tubes, needles, medicine and multiple operations – she had her first at 21 weeks.
Every day involves at the very least 12 hours strapped to a machine, which feeds nutrients directly into her stomach, heart and veins.
Mum Leeanne, 36 and policeman father Winston, 35, from Great Yarmouth, are desperately fundraising for improvements to their home to give their daughter a better quality of life.
Tuesday was Willow’s first day at home for five months, after long spells in the James Paget University Hospital (JPUH) and Great Ormond Street Hospital in London. During this time she had to face nights away from her parents and underwent numerous operations, with Leeanne and Winston being trained how to care for her.
Leeanne, who works at Great Yarmouth College, said: “There’s not a lot of children like Willow. She is perfect, so so good. I don’t know how she does it, she is such a strong and cheerful girl and she wants a pink wheelchair for her hospital stays. When she had the recent operations she was absolutely brilliant but my heart was breaking at the same time. The hardest thing is wanting her to be normal; it is an innocent thought.”
Willow has three tubes feeding vital nutrients into her body and a Hickman line which goes into a vein to administer medicine and for the frequent taking of blood.
Next to Willow’s bed is the feeding machine. She shares the room with her six-year-old sister Daisy, whose sleep is often disturbed as Leeanne and Winston normally have to tend to her younger sister up to four times during the night.
The adaptations the couple plan for their home include an extension to fit a clinical room so the machine does not have to be in Daisy’s bedroom, a medical storage room for her medicine and other equipment and an adapted shower room.
“I want her bedroom to look like a little girl’s bedroom,” said Leeanne.
“I don’t want her stuck in a hospital bed, I want her home. If I have to be mum and nurse I will. And it is not fair on Daisy, it is like having a baby back in the house. I just want to make things as normal as possible for them both.”
Willow has to go back to Great Ormond Street in nine weeks for another operation.
Leeanne and Winston raised £3,000 for Great Ormond Street Hospital last year, which prompted friends to suggest they stop being so generous and raise the money for themselves.
Their friends have begun a fundraising campaign called Willow’s Journey. Visit www.facebook.com/Willowryejourney or email firstname.lastname@example.org