The parents of an inspirational little girl from Horsham are calling on the public to help raise enough money to give her a chance of walking for the first time.
At two-years-old Emily Milner has suffered more physical pain than most people do in a lifetime - yet she manages to keep on smiling.
Born at just 29 weeks and weighing just 2lb 1oz she has been beset with serious health problems throughout her young life. She suffered brain damage during her traumatic birth and has since been diagnosed with spastic quadriplegic cerebral palsy which means she is unable to walk or even sit up unaided.
On top of this, she is fed through a tube because she is unable to swallow properly.
Emily’s devoted parents Nickie, 32, and Carl, 33, who have had to fight every step of the way to ensure she has the best care, are now aiming to raise £65,000, needed for an operation in America, which will help her take those precious first steps.
They have enlisted the help of friends, family, local schools and businesses who have all started raising the money needed for the selective dorsal rhizotomy in St Louis, America. The procedure involves surgeons cutting defective ligaments which are preventing movement in Emily’s arms and legs, in the hope that she will be able to take her first steps and lead a more normal life.
Nickie, who lives with her family in Roffey, said: “Emily cannot hold her own weight because of her condition and she has these very painful spasms. She wakes up screaming and doesn’t sleep very much, which means we don’t either.”
But despite her problems, which also includes anaemia, Emily is a happy little girl.
Her mum said: “As long as she is comfortable she is smiley and chatty, but if she is in pain then everybody knows about it.”
As well as suffering from cerebral palsy, as a consequence of the feeding tube, Emily has growth problems so is the size of a one-year-old baby. She is due to have an operation in the next five weeks to have a permanent feeding tube placed into her stomach and her parents hope this will help her development.
The fact Emily has an ‘unsafe swallow’ and is fed through the tube means she is susceptible to infection and illness and has had pneumonia three times, including one occasion aged just nine months when she nearly died.
Rather than feel sorry for themselves, the family has set a three year deadline to raise the daunting total but wants to reach £10,000 within 12 months so Emily can have her initial assessment in the U.S. once she turns three next March.
The operation is not available on the NHS but Emily, who requires almost constant medical attention, must be referred to the St Louis Children’s Hospital in Missouri by a consultant in this country. Some of the money raised will also help pay towards specialist equipment for Emily such as a lightweight specialist pushchair. Nickie, who gave up her job as a midwife to care for Emily, said: “The chair she has from the NHS is pretty bog standard and is really heavy - it hurts my back.”
Nickie and Carl, who have two other children, Jack, 10, and Holly, four, already have a fundraising plan in place thanks to specialist charity Tree of Hope and local Rotarians but need even more support of Horsham residents and businesses.
Nickie has been overwhelmed by the support they have already received: “It is so sweet that people want to do the best for her. A lot of these people do not really know her.”
The first major fundraising event is a quiz night at the Norfolk Arms pub on Crawley Road on Saturday May 17, starting at 7.30pm, where there will also be a raffle and an auction.
The Milners are also planning a gala ball on October 25 but they are looking for help from businesses and people in the entertainment business to ensure the event is a success. They want to find a tribute act to perform at the ball at the Mannings Heath Hotel and will also need help to pay for the singer’s fee. The Milners are also calling on donations of auction lots and raffle prizes for the event, which will host 80 people. They also want to secure the service of a celebrity who would be prepared to compere the event.
If you want to book tickets for the quiz night at the Norfolk Arms, which include food, at £10 each or feel you can help Emily and her family in any way then please contact her at Hope4Em@aol.com.
Alternatively, if you want to make a donation to the Hope for Emily fund then visit https://www.justgiving.com/Emilymilner/