A Lostock Hall family have begun a funding battle to convert their home so their four-year-old son can live there.Advertisement
William Ballantyne spent much of his early life in hospital after suffering a bleed on the brain when just 18 hours old.
His parents Becky Hill and partner Neil Ballantyne have launched a fundraising campaign for the extension they need to their home to ensure there’s space for their older son Jamie who is seven.
Here in their own words they describe the journey they have faced and why the money is so badly needed.
My name is Becky Hill and my partner Neil and I are parents to two beautiful boys; Jamie who is seven and William who is four.
William was born on the 21st August 2014 and like most other people we were expecting a perfectly healthy baby, especially after an uneventful pregnancy and a routine labour. Unfortunately that wasn’t the case and 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. We now know this to be 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.
We were lost in a cycle of minor improvements and cruel setbacks, with no answers and a dire outlook. 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, where our cycle of progress and despair continued.
Alder Hey soon became a second home, and the 70 mile round trip from Preston became a daily routine. Birthdays, Christmases and school holidays went by, other families facing their own difficulties were admitted and discharged, even staff members came and moved on; while we remained. 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. These episodes were the underlying reason why we started to think we would never reach a discharge date and that William may have to have to live in hospital indefinitely.
After one of many meetings with William’s Multi Disciplinary Team we were at a dead end with no more diagnostic processes to carry out and no more experimental treatment methods to try. We were all as well versed as we could be in managing all of William’s many secondary complications and for the most part he was stable.
The exception to this was his unannounced apnoeic episodes which were as dangerous as ever. 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 a
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.
This eased us into our new routines and prepared us for our long-awaited discharge date. We began to tick off milestones which we thought we would never see. Walks with the pram as a family of four, taking car journeys, family meals together and just generally including William in family life under one roof were all emotional times.
Bringing William home also had a massive impact on our older son too. From the age of three, if Jamie wasn’t asleep or at school, he was either in hospital or commuting to and from. 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 does provide us with opportunities 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. As parents, we have reached a level of confidence in our medical training where we can enjoy family life while living with our sobering responsibility.
As I write this, 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.
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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 gastronomy 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.
Since our discharge from hospital we have adapted to our new life as well as can be expected, and both of our boys are happy and doing well. 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 wet-room 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 William 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.
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. Sullivan’s Heroes are a registered charity 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. I would encourage anyone to learn more about Sullivan’s Heroes, their story, and the work that they do.
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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.
Many thanks for reading a bit about our story.
You can donate on the Justgiving page to help William.