Anyone who follows this blog will know that I’ve written in quite a lot of depth about my struggles as a disabled person, and about my son’s struggles as an autistic child with learning disabilities. In this blog I want to talk to you about another family I know, who have a disabled child. Their needs far surpass ours and they are my heroes.
When I was pregnant with my now 8 year old I joined an online antenatal group on Babyworld. It was for February babies. In the second half of my pregnancy we had a new member, Trish, she was supposed to have her baby in March but he had been born very prematurely so she had asked to join our group.
When our babies were still little we met offline for the first time. Adam was a tiny little baby and they’d been through the mill. I took to Trish right away- she’s one of the funniest, warmest people I’ve ever been lucky enough to meet. We became good offline friends- living only a few miles apart from each other. A couple of years later Adam’s little brother was born. Lewis seemed like a perfectly healthy little boy. When I attended his christening he seemed just like any other baby of his age, but problems were beginning to arise.
Shortly after this Lewis’ health seriously deteriorated. He couldn’t eat, he was chronically sick, and had to be hospitalised. Eventually he was diagnosed with Severe Dystonic Cerebral Palsy, epilepsy, and many gut problems including Pancreatic Agenesis (he has no pancreas). Lewis can’t eat and needs to be fed through a tube, he is non-verbal, cannot sit unassisted, and regularly turns blue where he can’t breathe and requires suctioning and oxygen. Trish, in turn, has had her own significant health problems.
The last 6 years have been incredibly stressful for the Tupper family. Lewis’ life has been under threat on numerous occasions and the family has been separated by Lewis’ health and Trish’s need to be in the hospital to care for Lewis. Yet despite all of this they are one of the most loving and amazing families I know. Despite not being able to speak Lewis is the most hilarious little man. He can also be a little diva. He is obsessed with Chuggington and Toy Story and if he can’t see his iPad 90% of the time, he lets you know he’s an unhappy bunny, but the minute it’s back in view his face breaks into a beautiful smile and he has an amazing little chuckle. I don’t think I’ve ever met a child whose smile is so incredibly infectious. To know Lewis, is to absolutely adore him.
Knowing Lewis and his family has been a real eye opener for me. Most of it incredibly positive, but not all of it. Before I knew the Tuppers I had no idea that so little was funded. He needs an enormous amount of equipment, but barely any of it is covered. They don’t even receive enough prescription nappies. The family had to move house as it was proving increasingly difficult to get Lewis into their house (which included many downward steps), or up to their bedroom. The new house requires significant adaptations, but only the first £30,000 will be paid for. Lewis needs all manner of sensory equipment, car seats, wheelchairs, covers, supportive seating, and many other things.
Because this equipment isn’t funded by the state the family have to put in a hell of a lot of effort to fundraise for Lewis. They have held dinner dances, discos and barbecues and family members and friends have run numerous marathons and other athletic feats. Yet the family still need much more money for very vital equipment. As Lewis continues to grow out of his equipment, it all needs to be replaced. The task of fundraising is huge and endless. They should be free to concentrate on their sons, but instead they have to devote a significant amount of time to raising money. There is a financial premium placed on disability aids, and they are hugely expensive.
In addition to this the amount of carer’s support provided by the state is insufficient. Trish has gone months on an hour’s sleep at a time. She has to get up throughout the night to give Lewis his medication, and to care for him when he needs support. She’s been so exhausted, but her tenacious support of her sons has been unwavering. How can it possibly be justifiable to leave families in this situation? Austerity has had a significant impact upon the support given to families touched by disability, and it was insufficient beforehand. Such little help should be seen as a shocking scandal, but in the UK it is entirely normalised.
Despite having all of this to contend with Trish and her family have been an amazing support to me. When I couldn’t get to the doctors for months on end, Trish found out and turned up at my door. She had made me an appointment and was there to drive me. When my husband was hospitalised her family picked me up, and took me to their home, later they drove me home bought us all dinner and got a mother’s day card, and flowers, for me from my children because they didn’t want me to miss the day due to the situation we were in. They are just those kinds of people and I am in awe of them for it.
On the 7th of December, Trish revealed that Lewis’ sensory lights which had been bought with money from Lewis’ fund had been stolen from outside their house. Someone had cut the lights down and simply run off with them. Trish is absolutely distraught. It’s not just that they stole the lights- they stole all the effort they put into fundraising, Lewis’ happiness, and people’s generosity. I want to replace some of what was stolen from them and in doing so I am asking for your help. Here is my list of the ways you can help: if you can, please take a minute to follow or message the family Christmas greetings on Twitter: @Lewisfund; tweet out in support of the Tuppers and to shame the thieves who would do this to them; share his facebook page http://www.facebook.com/LewisFund or his website http://www.lewisfund.co.uk but please do share Lewis’ fundraising page https://www.justgiving.com/LewisTupperFund/, or this blog post; and if you can, and I know it’s a big ask, please donate. Even if it’s only £1 it makes all of the difference. More than anything, I want the world to know about this special family.