A Hall Green family is holding an online raffle to raise funds for their severely disabled children.
Aiza Ellahi, 12, and her brother Subhaan Ellahi, 8, from Hall Green, in Birmingham, are both non-verbal full time wheelchair users and require 24-hour care at their home. They both require fully committed care teams with the ability to care for them both closely and are supported by the NHS Children Complex Care team and Pallative Care team.
They have been diagnosed with Dravet syndrome – a rare condition which affects around 1 in 15000 people. Aiza and Subhaan experience severe epilepsy, developmental delay, hypotonia and movement disorders. They experience frequent and prolonged seizures causing severe muscle stiffness and this is expected to become more severe as they get older.
In spite of this, they love to be outside when conditions allow, and enjoy music and hydrotherapy sessions, which help to ease the stiff, painful joints caused by their conditions. Their mum Sadia Akhter, 39 who works with special needs children and dad, Pervais Akhter, 41, a driver, and their supporters are hoping to raise £25,000 to build a sensory garden equipped with hydrotherapy equipment for the children.
Sadia said: “Day to day life can be very challenging and very unpredictable for both Aiza and Subhaan especially when their seizures are uncontrollable.
“Subhaan is the most vulnerable. Last year he had a respiratory failure causing him to end up on life support machine for 21 days. We were faced with the most difficult times in our lives, preparing to say our final goodbyes, something which no parent should have to ever go through.’
“He is our little miracle who fought all the odds and pulled through and was given a new chance in life. This experience taught us to never give up and make the most of all the opportunities life throws at us and create more amazing memories.’
“Aiza and Subhaan both enjoy sensory activities and being able to provide a safe access to the outdoor space would be a life changing experience. They would benefit immensely by experiencing the outdoor life and nature, as they have never had the opportunity to do so in their garden.”
Aiza and Subhaan use their different sensory systems to understand the world around them. They process information through their senses in their own unique ways - they can’t interpret their surroundings and communicate their needs as we would and we have to acknowledge their nonverbal, bodily, sensory and emotional forms of communication.
One adverse consequence of their severe disabilities is their limited opportunity to engage physically in play. For them, however, the importance of this cannot be overstated - it provides them the opportunities to promote their mental and physical health. “Please help us to make Aiza and Subhaan’s wish come true for a sensory garden and help them have the safe access to the garden where they can explore and sense the true nature and give them both the best possible life chances in creating more beautiful memories with us as a whole family.”
The family is holding an online raffle of items donated by local businesses including a makeover voucher, a luxury facial & a session on a massage chair. Other prizes include a food hamper, a hot drink & waffle, and gift coupons courtesy of local businesses Asda, Tesco, M&S, McDonalds, Waffle Project, Greggs, KFC, Sofa Bliss, Tender Sleep Ltd, Shamglamledled Beauty and Beautygram. Wickes in Stirchley has donated materials to use in constructing the garden.
The Akhter family is being supported by children’s charity Tree of Hope which helps families fundraise for children like Aiza and Subhaan with healthcare needs and provides charity status to benefit from gift aid, corporate support while also providing donor reassurance. Tree of Hope CEO Gill Gibb said: “We wish the family all the best with their fundraising efforts and hope Aiza and Subhaan can have the sensory garden which would mean so much to them.”
