10-year-old Avah Faith McGinty, the inspiration behind Spina Bifida and Hydrocephalus charity LoveHope&Faith, has touched thousands of lives with her determination to let nothing stop her.
Now her family are hoping to go further to reach others living with the same experiences as them by announcing their plans to open a retreat lodge for those with the conditions and their families.
Avah's parents Darren and Emma started LoveHope&Faith over six years ago to offer relief to those in need through a framework of active support and encouragement for children with Spina Bifida and Hydrocephalus and to promote their future well-being.
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Speaking to Belfast Live, Darren said: "The reason we started the charity was for families with kids with Spina Bifida and Hydrocephalus to just try to get through things and get any equipment needed - we set LoveHope&Faith up because of Avah.
"The plans for the future is that she will take over when she is 18 and is classified as the founder of the charity so will have more and more input when she gets older."
One of the charity's main aims was always to build a retreat home those with Spina Bifida and Hydrocephalus within their family circle, and Darren and his family are delighted to be taking the first step to make this dream a reality.
"It is in quite early stages despite planning it for a long time. Our 3D plans came out this week which means we can move towards a business plan and a feasibility study before we seek capital funding for the lodge and that is how it will be built.
"That is the next step which should hopefully be completed by the end of June," he explained.
Plans for the retreat lodge include a hydrotherapy pool, sensory room and sensory landscaped gardens to offer an accessible escape for families across Northern Ireland.
Darren continued: "Some families with kids with Hydrocephalus and Spina Bifida can't travel abroad and the reason why we have created this retreat is so that people have somewhere where they can go to take away the stress of daily life and go somewhere different for a day or two.
"Kids with Hydrocephalus adapt very quickly with sensory elements - they like the lights and sounds so the hydro pool and sensory room would be the two main elements that we will focus on."
As a collective, LoveHope&Faith would be the first charity in Northern Ireland to complete a project of this magnitude.
"It will be something completely different. This is just totally ground-breaking and it's going to change lives and hopefully take away that stress from their daily lives and hydrotherapy can be very hard to get hold of - there will be no costs with this," he added.
Darren said that he shares all the work they do with Avah and why they are doing it - so she can understand the impact she is having on other children's lives.
He said: "Each time we just get that little bit more of excitement off her and it is something that we have built up for Avah, to be able to hand over to her someday.
"It's really turned into something special from where we started and we have great support around Ballymena and even further - all over the North we have had great support and feedback from what we do."
Andrew Wisener from MAW/Architects completed the 3D plans of the new retreat lodge which Darren said completely matched his vision from the very start.
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