A family is facing a race against time to raise almost £40,000 to adapt their home for their four-year-old son who has severe breathing difficulties.
William Ballantyne spent much of his early life in hospital after suffering a bleed on the brain when just 18 hours old. He was unable to breathe on his own and was prone to life threatening episodes of apnoea.
His parents, Becky Hill and Neil Ballantyne, 33, were faced with the prospect of him never leaving Alder Hey Hospital, but with in-depth training, and a suitable care package, he was released 18 months ago.
They still need to adapt their two-bedroomed bungalow in Lostock Hall home, and create an extension.
They have managed to secure a government-based Disabled Facilities Grant (DFG) grant through Lancashire County Council, but they need to make up a shortfall of £39,000 by April, otherwise they will have to apply again.
Read other stories: ‘Make a huge difference to a child’s life’
Becky, 31, says: “We have dedicated the living room of our two bedroom bungalow to William, his specialised bed, and his equipment because it is the only room big enough to fit it all in.
“Our compact bathroom has a shower which we use to bathe William by sitting him in the shower tray on a mesh seat.
“Our home routine only works because we can pick William up and carry him around the house, but he is four years old now and only getting bigger.
“We have been awarded a Disabled Facilities Grant (DFG) to help with adapting our home to better meet William’s needs both now and in years to come, but even though the figure is the maximum permissible amount, it doesn’t cover half of our cheapest builders’ quote.
“The money we are raising is to supplement our DFG to provide our home with ramped access to the front and rear, a wetroom to shower William, a bedroom suited to his needs with a ceiling mounted hoist, and give us back a family living area which can accommodate us all, with wheelchair friendly access to every room he needs.
“Our builders quotes for the work indicate we need to fund a £39,000 shortfall if we have any hope of adapting our home to accommodate William.
“It has been a long process to get the DFG grant and putting our plans through building regulations. But we need to raise the funds to complete our building work by the end of the tax year - April.
“If we cannot raise the money in that time, we can’t build the extension and we have to go through the whole process again. We would be put on a waiting listing which could be up to two years.
“We would be put on a waiting listing which could be up to two years.
“In our journey to achieve this we have talked with many great charities and have been lucky enough to have gained the support of Sullivan’s Heroes, which helps families in our position by backing their Just Giving pages and providing an easy platform for other charities and companies to donate to their cause.
“We are grateful for any help which gets us closer to being able to accommodate William into his family home and allow us as parents to celebrate his continued development without worrying about how we are going to look after him as he grows.”
William has gone through a lot in his short life, as Becky explains: “When William was 18 hours old he suffered a massive seizure with a bleed on the brain, he went into a coma and would not breathe for himself, as a product of an underlying, undiagnosed neurological disorder. William was placed on a ventilator in Preston Hospital’s Neonatal Intensive Care Unit, where he would spend the next six months.
“In May 2015 William was on the High Dependency Ward in the Paediatric Unit at Preston when he suffered a major apnoeic episode and cardiac arrest, he was invasively ventilated yet again and transferred to Alder Hey Children’s Hospital, which became a second home.
“William was making progress and no longer hopelessly dependant on a ventilator, but he was still prone to life threatening episodes of apnoea followed by cardiac arrest.
“These were without any warning and usually required the attention of the crash team.
“We started to think we would never reach a discharge date and that William may have to have to live in hospital indefinitely.
“We began to realise that we had a choice to make between either living in hospital or accepting the risk of a failed resuscitation attempt at home.
“We wanted to bring him home, and the amount of things that needed to be organised and put into place to make that happen seemed like such a mountain to climb.
“Mitigating the risk of bringing William home required lots of training, both for us as parents and for the care package staff who would be recruited to assist us outside of the hospital.
“The charity, Wellchild, greatly supplemented the training we received from the hospital, and their Better at Home suite at Edge Hill University provided us with opportunities to simulate the types of situations we would have to deal with at home.
“As well as the ‘hands-on’ practice, the simulations helped us to accept that our responsibilities as parents would completely change without the safety net of the hospital.
“We began to accept that our actions would be the difference between bringing William back round or living with the consequences.
“Eventually we were ready to begin a phased discharge and bring William home for the first time.
“Bringing William home also had a massive impact on our seven-year-old son, Jamie too. Jamie was six when William was eventually discharged and we felt like we owed him a childhood, which we could now start to deliver on.
“William’s condition had meant we have had to use our training, but thankfully these episodes are getting fewer and further between.
“His development in all other areas is coming on in leaps and bounds now that he his home and this reassures us that we have made the right decision to discharge him. We understand the risk we have taken and we feel as well prepared as we possibly can be.
“William has been home from hospital for around eighteen months and is doing well.
“Daily life can be challenging however, as caring for William has many complications.
“William can not walk and it is unlikely that he will ever be able to. His verbal communication is making progress but has not advanced to the point of being able to say “mum” or “dad”.
“His food is delivered via a feeding pump and a gastrostomy because if he ate food in the normal way, some of it ends up in his lungs.
“He can breathe for himself most of the time but sleeps with the aid of a non-invasive bi-PAP ventilator.
“William is still capable of stopping breathing without warning, and can very quickly go grey and floppy.
“These instances require us to resuscitate him using a bag and mask connected to an oxygen supply - which we carry everywhere he goes.
“Other equipment that must always be kept in arms’ reach is a mobile suction machine to clear out anything that may be plugging his airway, and 24/7 oxygen saturation monitoring.
“William has lots of life limiting complications, but you could not wish to meet a more happy or endearing little boy. His older brother Jamie, has spent far too much of his childhood sat in hospitals and witnessed more medical emergencies than any child should have to, but he is William’s best friend, loves him completely, and wouldn’t have him any other way.”
To make a donation visit http://www.justgiving.com/fundraising/WilliamB21814 or search for “William’s Home” on via www.sullivansheroes.org