We are delighted to announce the first of 2025’s completed adaptations project to be unveiled by Sullivan’s Heroes – with the works for ‘Jacob's Journey for home adaptions’ now in everyday use by 9-year-old Jacob.
Jacob was born with a rare genetic condition called NEXMIF/KIA2022 which causes him to have severe global developmental delay, profound learning disabilities, epilepsy and severe gastro reflux.
Jacob’s parents enlightened us on what this means in terms of the project requirements to meet Jacob’s needs:
“Jacob was unable to get up and down stairs and we were carrying him up to his bedroom and the bathroom. It would be so hard and unsafe carrying him due to his weight and size, plus his behaviours. We used to struggle to get him in and out of the bath, he would be slippery and we couldn’t grab him to get out safely. Our backs would be hurting day in, day out.”
“Changing Jacob would have to be done in front of whoever was there in the living room as I couldn’t carry him up the stairs to get him changed. He had no dignity."
"We couldn’t get him using the toilet as that was upstairs too and we couldn’t manage getting him up and down numerous times a day.”
The project required to make Jacob’s home accessible to him by creating a downstairs bedroom and wet room for him, but the cost of putting these much-needed changes in place exceeded the local authority grant funding, leaving a £45,000 shortfall required to be met.
Undaunted, Jacob’s family embarked on raising the necessary funds with the backing of Sullivan’s Heroes. Their efforts quickly gained momentum, with friends and family donning their running shoes and hiking boots for multiple fundraising challenges, while numerous supporters set up various enterprising events to boost the donations.
Jacob’s parents themselves were no strangers to the activities – undertaking a gruelling 32 mile walk from Great Ormond Street Hospital (GOSH), London, to their home in Crawley, West Sussex. With Jacob having been a regular visitor to GOSH since he was born, his parents Sophie and Iain felt this would be a fitting challenge for them to undertake.
Their walk wasn’t without pain, but as this heartwarming video shows, every blister and ache was worth it – as their sheer determination, combined with overwhelming community support, raised over £3,500!
As their fundraising journey progressed, with Jacob actively participating in many events himself, the support from Sullivan’s Heroes proved invaluable, as Sophie recalls:
“We had access to grants available, our page was shared on their socials, we also had help with a banner for when we did our 32 mile walk! It was amazing seeing Jacob’s face on a banner and everyone could see what we were fundraising for.”
“The access to grants, and with our JustGiving page, gives it an advantage as people can see that it is legitimate, and the money wouldn't be used for anything but the home adaptations.”
“Being able to contact businesses for raffle prizes or holding a charity event all under Sullivan’s Heroes charity number helped massively! It was clear you were doing things the right way and businesses and companies could see that!”
Funds generously donated from an external organisation were pivotal at the start of the works, enabling access to be created at the front of Jacob’s home, as his mum advised at the time:
“We have managed to have a ramp to the front of our house completed and a new wider front door so we can wheel Jacob in and out at ease and even this has made such a huge difference already.”
Once the funds were in place, and the single storey extension could be built, the new bedroom and wetroom space created for Jacob has opened up a whole new world for him, as Sophie explains:
“Jacob has a bedroom and wetroom downstairs, we no longer need to take him upstairs. His wetroom is completely safe for him and there is no strain on our backs from struggling with him up the stairs or in and out the bath. He is so safe and finally has dignity.”
“Our life has changed immensely, Jacob has a ground floor bedroom and wetroom with a changing table. We no longer need to try and struggle with him up and down the stairs. He has dignity, independence and a better life… as do we!"
“As Jacob wakes up in the night as he sleeps downstairs he no longer wakes his sister up in the middle of the night so she gets a full night’s sleep! We have been able to start Jacob on the toilet and he loves using it and has been able to understand what it is for! Bathtimes have become so much easier and safer! Honestly, our life has been changed and we are forever grateful!”
We at Sullivan’s Heroes are thrilled to see Jacob’s incredible new spaces in place and making such a positive impact, and equally so to receive these kind words from his parents, who shared their experience of the process and their insights on how our charity supports other families in similar situations:
“Fiona was amazing! From the beginning when we spoke on the phone, she was so understanding and always so helpful with advice and support! Our fundraising wasn't easy especially as you are already caring for a disabled child and you have lots going on but with Sullivan’s Heroes we had the help, support and encouragement we needed! I remember when I got stuck with things I didn't understand or know the answer too I would drop Fiona a message and she would reply straight away with the help I needed or pointed us in the direction.”
“Sullivan’s Heroes are a fantastic charity and anyone struggling to fundraise for home adaptations for their disabled child need to contact them immediately! So much knowledge, understanding and support! Thank you for everything Fiona!”
