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Scorching Summer News!

With the warmer weather has come a flurry of new projects getting underway, plus new applicants to Sullivan’s Heroes.

One such new project is ‘An Accessible Home for Zep’. The adaptations to extend and restructure the existing family home to provide 7-year-old Zeppelin with a wheelchair accessible bedroom and wetroom, plus external access, requires £20,000 to be raised above the Disabled Facilities Grant awarded.

Zeppelin’s parents explain:

“Zeppy is a funny, cheeky, mischievous little boy with an infectious smile and a huge heart. He also has Duchenne Muscular Dystrophy, a devastating and life-shortening muscle wasting disease which currently has no cure. By his teens he will be robbed of his ability to walk entirely, to hug his friends and family and eventually, to breathe on his own. One day it will reach his heart. Our goal is to make his life wonderful! We are currently adapting our home to build a downstairs bedroom and wetroom for Zep so that when the time comes for Zep to be in his wheelchair full time, he can live as comfortably and independently as possible with the dignity every child deserves. As his condition progresses, Zep will rely entirely on mobility aids, hoists, breathing equipment and full time care. We aim to open up the house so that it is fully accessible for Zep and his wheels. The cost to do this is huge and having spent the only savings we had on Zeppelin’s wheelchair and a wheelchair accessible vehicle to get us from A-B, we now have a shortfall of £20,000 to cover the cost of the build.”

Another recent applicant to Sullivan’s Heroes is Ciara, who’s project ‘Ciara’s big build’ requires £20,000 to be raised above the Disabled Facilities Grant to extend the family home, to include level/ramped wheelchair access into the front of the property, widening of doorways, plus a ground floor bedroom and shower room extension with wheelchair access to the rear garden for Ciara. 

Ciara’s mum advises:

“Ciara is my 16-year-old daughter who was diagnosed with Charcot Marie Tooth Type (CMT) 2a, when she was 4 years old. CMT is a muscle wasting condition and she is now unfortunately wheelchair bound. She relies on myself for her care needs. Since Ciara and her brother, Sid, lost their dad to cancer in November 2019, just one day after his 50th birthday, each day has been a constant battle for them. More so for Ciara as her disability is very frustrating for her. We had to move house recently as my family circumstances changed. One of my older twin boys moved out on his own and I couldn’t afford to stay in the house we were in. Our new house is great, but Ciara doesn't have a bedroom or wetroom and like anybody, Ciara needs her privacy and a bedroom more than anything as her bed is currently in the living room."

Other projects that are now underway, whilst the families continue to fundraise to complete the works, include ‘Funding for Georgia’s bedroom and bathroom’, where works have started on extending the existing family home to build a ground floor bedroom and bathroom with ceiling track hoisting to give access to a bathroom with a specialist bath for 17-year-old Georgia, together with creating level wheelchair access to the property. 

Georgia’s Mum tells us:

“It has not been smooth sailing but we remain positive and keep taking steps forward so that Georgia will soon have her dream bedroom and bathroom!” 

This video here shows just how far the works have already progressed towards Georgia’s dream space!

Meanwhile, work on ‘Olive’s accessible house’ has also commenced to extend and adapt the family home – adding a side extension with an additional bedroom and specialist adapted wetroom; access throughout downstairs and externally, plus installing a through-floor lift. 

Olive’s Mum stated:

“Luckily we had some sunshine when they knocked a huge hole in our house! The garage has been demolished and the existing walls at the back of the house have been pulled down ready for the new foundations to be put in next week.”

Olive herself was recently busy raising funds towards the £40,000 deficit for the project – undertaking a planned 1km run using her Frame Runner. Olive did amazingly and ran nearly double the total target distance – she even had time for a well-earned stop for ice cream!

Other intrepid fundraisers have also been bravely participating in their own nerve-wracking challenges! Mylo’s dad David undertook a 25-minute shark dive at Deep Sea World, in Fife – free diving, with no cage! 

David took on this formidable challenge to raise funds for ‘Mylo’s new downstairs bedroom’ – towards the £34,000 required to provide a downstairs bedroom and wet room extension and safe living space for 2-year-old Mylo. David expressed that the challenge was a perfect fit considering Mylo loves the song ‘baby shark’! 

Whilst in Northampton, ‘Eleni’s Abseiling Team’ – which included Eleni’s mum Eloise among the fearless friends – abseiled from the lofty heights of the Northampton National Lift Tower to raise funds towards ‘Eleni’s little big build’. 

Although high winds meant the team couldn’t abseil the outside of this 418ft (127 metre) tower, they bravely covered the heights inside the tower – including sections facing forward! – and raised over £3,500 towards the £20,000 target required to ensure a single storey extension can be built to provide 2-year-old Eleni with a downstairs bedroom, bathroom, storage space and a bath to meet her needs.

The recent weeks have seen a number of generous donations roll in for various of the children being supported, which are gratefully received.

Howdens have boosted two projects which are nearing completion – the ‘Last Blast for Sebby’s Space’ and ‘Funding Ishani’s Forever Home’ – with both monetary and appliance donations. Meanwhile The David Gibbons Foundation supported ‘Dominic’s New Bedroom and Bathroom’ project, due to start building works later this summer.

Other building projects which are well underway have also secured generous support – with ‘Building Thomas a Future in Bromley Cross’ receiving further funding from Barbara and Derek Calrow Charitable Foundation and funds from Ian and Clare Mattioli Charitable Trust; whilst outstanding elements required for ‘Ruby’s Big Build’ have been funded by Florence Nightingale Aid in Sickness Trust together with The Winifred Eileen Kemp Trust – suitably coinciding with Ruby’s 7th birthday celebrations. 

Both Ruby and Thomas have been keeping a watchful (and sometimes astonished!) eye on proceedings, as their homes become transformed.

‘Courageous Cory’s Big Build’ also received a helping hand from Hannah’s Willberry Wonder Pony Charity for final items needed to be installed in the new spaces, and ‘Noah’s new bedroom, bathroom and accessible garden’ received the final flooring elements required via funding from Cash for Kids

Which brings us to conclude with the exciting news of the now completed ‘Noah’s new bedroom, bathroom and accessible garden’!

The adaptations – which were finished in time for Noah to celebrate his 12th birthday in style in his new accessible spaces – involved converting an attached garage into a bedroom and wetroom, with a ceiling track and hoist to aid Noah’s mobility.

Noah’s Dad explains:

“Before we had our home adapted, one of the main difficulties we faced was lifting/carrying our son up/down the stairs to access his bedroom and our family bathroom. Additionally, the family bathroom was too small to carry him in and give him a wash in his bath chair. The lifting and carrying meant we were putting both our son and ourselves at risk. Our kitchen diner space was too small to be able to feed our son whilst he was in his wheelchair, and the garden access was also an issue as the patio door was not wide enough for our son’s chair and there was a step down onto the patio which was very old and uneven.”

The project saw Noah’s family raising the £17,000 required above the council grants awarded for the works, through personal donations, together with support from various external charitable funds and organisations.

Noah's Dad tells us:

“Noah now has a downstairs bedroom and wetroom with a ceiling hoist as well as additional space in the kitchen dining area. We do not have to carry him around the house and can transport him safely from bedroom to wet room as well as putting him in his chair. Our son can enjoy his wash time in his new wetroom and there is plenty of space in his new bedroom to store all his medical equipment. Noah can have his meals in the kitchen dining area and more importantly eat with the rest of his family, and that has brought us closer together as a family.  We can now also take our son into the garden with ease as new bifold doors have been installed for wider access and the patio has been updated so that it is level with the door which means we can just push his wheelchair smoothly into the garden. He can appreciate the outdoors and nature which is important to him as he has visual impairment and so relies on his sense of smell and sound.”

“We as a family can now look after our son safely and meet all his caring needs with the new accessible rooms and added space.”

We are so pleased at Sullivan’s Heroes to hear of the benefits these adaptations have brought to Noah’s life – and we look forward to bringing further news of progress with the other projects we’re supporting.

Please do get in touch if you have any fundraising events, activities and ideas you’d like to share with us; or if you would like to apply for a grant or to fundraise through Sullivan’s Heroes.

Thank you for your ongoing support, it is greatly appreciated.