A little boy and his grandparents will have a slightly more convenient life thanks to All Things Possible Ministries and the generosity of some Rock Hill residents.On Giving Tuesday, Fort Mill-based All Things Possible Ministries presented two-year-old Ryley Hufford and his grandparents, Cindy and James Hufford of Rock Hill, with a special P-Pod chair, designed to help make feedings and mobility easier for Ryley. Ryley was born with 1P36 deletion syndrome, a rare disorder in which he is missing genetic material from one of his 46 chromosomes. As a result he suffers with digestion problems, low muscle tone and scoliosis, his grandmother said.Ryley is about seven months old developmentally and weighs 17 pounds, Cindy Hufford said. He wears a body cast to help strengthen his spine, but cannot walk, stand, sit, talk or crawl. Through a Nov. 12 fundraiser at Michael’s Rock Hill Grille, community donations came to $6,500. The money was used to buy the chair, which will provide support and mobility.
It also will ease stress on James and Cindy who, until Tuesday, carried Ryley and slept in shifts to provide the child with constant monitering.“Carrying him around is one thing, but arms only provide so much support,” James Hufford said.When she saw the chair, Cindy cried.“Ryley appreciates it,” she said. Due to a malformed pallet, allergies and a digestive disorder caused by his condition, Ryley is difficult to feed. The P-Pod chair will hold him in the proper position and allow the Huffords to bring him to the table where they can eat together.“This is going to be so beneficial,” James said. “I don’t have the right words to say. The money also will go to help purchase a cranial band helmet to help Ryley avoid life-threatening surgery due to his brain shifting, his grandmother said. “It’s going to be such a helpful thing for us and comfortable for Ryley,” she said.Medicaid would not cover the chair or helmet, so fundraising was a necessity, Cindy Hufford said.“
We had no idea it would be such a wonderful thing, people donating to Ryley’s cause,” she said.A life of changing diapers, constant feedings and very little sleep isn’t how the Huffords, both former Marines, thought they would spend their retirement. However, they have taken on the challenge since they got custody of Ryley at 7 months old.“It takes a toll. They have no time for themselves,” said Lisa Sextion, All Things Possible executive director.Sexton said Giving Tuesday was the perfect day to present the chair. That day is set aside as a worldwide event to encourages generosity.“It’s just one of those things that came together so easily," she said. “Seeing the appreciation and the tears even, it’s a special gift.”All Things Possible got involved as the organization hosts medical fundraisers for families like the Huffords, Sexton said.“The families we adopt, we stay with them," she said. “We make it personal because it is personal. These are people’s lives that can be changed for the better if someone just brings it to the attention of the community.
That’s why we do what we do.”Little Ruby Turner O’Connor has suffered from an undiagnosed condition since she was born ten weeks premature with her twin sister Hope who was stillborn. It has left the six year-old unable to walk, talk or feed herself. She spends 22 hours a day on a peg feeding tube as her weight was so low. Ruby, who attends the Bridge School in Sutton Coldfield, also suffers from curvature of the spine which has left her unable to sit up by herself. Doctors recently fitted her with a cochlear implant which has helped her to hear, but left her confused at first. And she has seizures, which means her mum Tina Turner and step dad Craig Granner have to constantly watch her when she is at home. Last year Ruby was off school for five months due to a chest infection. Her mum Tina and step dad Craig Granner feared they would lose Ruby before Christmas when spent three weeks in Birmingham Children’s Hospital and underwent a toncillectomy. They were asked to do a ‘care plan’ to say whether she should be resuscitated if she lost consciousness.
Ruby was back in hospital at the end of February with more chest problems and was treated with IV anti biotics. We had to do a care plan for her, we didn’t think she was going to live,” said Tina. “She was in hospital two weeks ago with three viruses and aspiration pneumonia. “Despite her illness she is a happy little thing, she loves to be tickled and responds when we talk to her, when she leaves her cochlear implant in, the little madam. She is a fighter, despite all she has been through she is still smiling.” Tina and Craig are constantly trying to find the best ways to help Ruby have a better quality of life. The family recently moved from a flat to a house in Erdington where Ruby, who attends The Bridge School in Sutton Coldfield, has more space. The couple also held a fundraising event at their local Salvation Army with a raffle, cake sale and appearances from children’s characters including Peppa Pig and Fireman Sam to help buy a P-Pod chair for Ruby. They wanted the specialist seating so that Ruby didn’t have to lie on the ground all the time, or spend time in her wheelchair, which isn’t comfortable.
Tina and Craig raised £600, which only covered half of the price. The seating wasn’t available through the NHS, but before they gave up hope of the family’s community nurse told them about the Newlife Foundation for Disabled Children, which has recently benefited from £1 million raised by partners Central England Co-op. Tina and Craig applied to the charity for help and they have been supplied with a £1,249 P-Pod, which is mobile and can be transported from room to room, which has transformed Ruby’s life. Tina said: “Ruby is more happy and content in her new chair. Quality time with the family is ten times better because I know Ruby is happy and safe. “We are looking forward to using in the mobile chair in the summer when Ruby loves to be out in the garden.” The partnership between Newlife Foundation for Disabled Children and Central England Co-operative, which began in 2012, has helped 442 children so far The Co-op’s contribution recently reached £1 million mark raised through in-store fun days, sporting events, car washes, jewellery sales and community awareness days.