Daniel Pretty lives in the county of Surrey in the UK. Like many 5-year-olds, he enjoys sports and playing with his little brother – but unlike many children his age, he needs help to do even the simplest of tasks.
Daniel was born with spastic cerebral palsy, a condition that makes his muscles very tight, prohibiting him from standing or walking unaided.
But you can help Medical News Today and Daniel with fundraising toward a potentially life-changing surgery.
In the UK, a surgical procedure known as selective dorsal rhizotomy, or SDR, is relatively new with poor availability, which is why Daniel and his family have sought help from Dr. T.S. Park, a neurosurgeon at the St. Louis Children’s Hospital in Missouri. The potentially life-changing surgery comes at some cost, however – $83,000 to be precise.
Tree of Hope – a UK-based children’s charity with close links to MNT – is helping Daniel’s family with funding, in addition to a £5,000 ($7,600) donation from us toward Daniel’s cause. The Tree of Hope is Medical News Today’s charity of the year.
Go to Daniel’s website for more details about how you too can help. Or donate to his cause by clicking the ‘donate’ button below.
Medical News Today will be bringing you updates about Daniel’s quest for treatment from mom Catherine’s blog. Meanwhile, here’s more on his story:
Cerebral palsy (CP) is a group of disorders affecting movement and balance that arise as a result of a brain injury or brain development problems. According to the Centers for Disease Control and Prevention’s information on cerebral palsy, for every 303 eight-year-olds in the US, one has some form of CP, with spastic cerebral palsy being the most common type.
Though Daniel has dealt with challenges most of us will never have to face, he has taken them in stride.
His determination to work hard and improve his condition will see him cross the Atlantic Ocean in mid-2014 to undergo a procedure in St. Louis that will increase his mobility.
Born over 2 months early in September 2007, Daniel originally had a twin brother who sadly died before birth, at 19 weeks. Due to an infection that developed, Daniel was delivered at 30 weeks, weighing just 3lbs. 7 oz.
When he was diagnosed with brain damage shortly thereafter, Daniel’s family was told that he would have physical effects as a result of brain bleeding. They quickly learned that this diagnosis meant he had cerebral palsy.
Because CP scrambles messages from Daniel’s brain to his muscles, it means he has abnormal patterns of movement. From an early age he has attended physiotherapy and hydrotherapy sessions with a pediatric team where he lives in Surrey. This helps him to train his body and helps him with his spastic muscles.
Although the therapy sessions have helped develop Daniel’s personality, he is still not able to stand or walk independently.
Frustration, understandably, is part of Daniel’s life. He once said to his mom Catherine:
“I wish I wasn’t disabled because then I could run downhill.”
But Daniel appears to face his challenges with a generous helping of gusto. He never skips the annual sports day at his school, and once a week, he attends swimming lessons. He also enjoys riding his favorite horse, Jim Bob, at riding sessions designed specially for people with disabilities near where he lives.
The St. Louis Children’s Hospital has recently accepted Daniel into a program for a procedure called selective dorsal rhizotomy (SDR). Dr. T.S. Park, the neurosurgeon overseeing Daniel’s case, has said he is an excellent candidate for the surgery, which, if successful, could help him dramatically.
SDR involves cutting some of the sensory nerve fibers that enter the spinal cord from the muscles. For the nerves that do work, this allows them to function better, improving the patient’s posture and even sometimes allowing them to walk without help.
By separating the abnormal nerves from the spinal cord, the messages from the muscle to the brain are reduced. This results in a better balance of activities within the nerve cells and, ultimately, reduced spasticity.
One of the major benefits of this surgery is that it only involves a 1- to 2-inch incision in the lower back, which is closed with glue rather than with stitches. Additionally, the surgery only takes around 4 hours, and the patient is in the recovery room for just a couple of hours before going to the neurology floor.
St. Louis Children’s Hospital says the way its surgeons do the SDR procedure – by cutting from only 1 to 2 vertebrae, versus from 5 to 7 – has several benefits:
- Lower risk of future spinal deformities
- Less post-operative motor weakness
- Reduced spasticity in the hip flexor
- Less intense back pain
- Ability to resume physical therapy sooner.
As with any procedure, there are certain risks involved with SDR. Although a very small risk, spinal fluid can leak, something that needs surgical repair (3 in 2,300 patients at the hospital in St. Louis). But for Daniel, the biggest risk is that the surgery may not permanently reduce his spasticity or improve his functional ability.
While it is a long way to travel from England to St. Louis, for Daniel’s family the risk is worth it.
When Medical News Today asked Daniel’s mom Catherine what having this surgery will mean, she said that on a practical level, making the surgery possible means working to raise the necessary funds, a month in the US for the whole family, and ongoing physical therapy for Daniel four times a week.
But on an emotional level, Catherine said of the surgery:
“It would change Daniel’s life completely if he could find moving around less challenging. At the moment everything is sooo slow.
It takes us a good 20 minutes to go to the toilet, then 20 minutes to go back to his playing, then he falls over and can’t sit back up again easily.
And of course when we’re in a rush we end up doing things for him, rather than allowing him independence.
It is so frustrating for him watching his friends play when he can’t join in or keep up. Even holding a book to read is difficult for him. Kicking a ball is nearly impossible – even just sitting and playing is so hard.”
Although Daniel likes doing things independently, he gets help from his 2-year-old brother Dexter, who appears to like the sense of responsibility he feels when he brings toys or drinks to big brother Daniel.
“The two boys adore each other and are full of cuddles.”
But the excitement Catherine feels about the prospect of Daniel being able to move more independently is also accompanied by a staid resignation to keep expectations realistic.
She notes that Daniel is not overly upset about not being able to walk, but she worries that if she plants the seed that he may be able to walk in the future, he might become less happy about his current situation – “that would be horrible for both us and for him.”
Daniel thinks the SDR procedure is going to be like Botox injections, which he has had during the past year to help him walk a little better.
Everyone at Medical News Today wishes Daniel the best of luck and we look forward to being alongside him in his quest for someday being able to walk independently.