Family and friends of 7 year old Rednal twins have been running, jogging, walking and generally attempting to put one foot in front of the other for 1000 miles to raise funds for the boys.
Twins Alex and Dylan both suffer complex disabilities as a result of a genetic condition so rare it can not be diagnosed.
Although their condition can’t be given a name, it certainly comes with plenty of symptoms, some of them life-threatening:
Global Developmental Delay, learning difficulties, Adrenal insufficiency (meaning they need to carry rescue injections), chronic lung disease, asthma, laryngomalacia, spastic diplegia, low tone, restless leg, hypermetropia, bilateral convergent squint, equinovarus deformity, planovalgus feet, severe sleep apnoea, recurrent respiratory illness, sensory processing difficulties, hip displasia, camptodactyly of fingers, mallet type deformity and dysmorphic features…
…are just some of the symptoms and issues the boys and their family deal with.
Both boys have difficulty with mobility and use wheelchairs and walking aids, and recently, Alex had to have surgery to straighten his feet.
Doctors decided he needed the surgery if he was to have a chance of walking with a frame or independently and the operation would need to be repeated as he grew.
Unfortunately the surgery did not go without complication. Having a complicated airway and chronic issues with his lungs, Alex had a difficult intubation and suffered a tension pneumothorax (a hole in his lung).
During further major surgery to repair his lung, surgeons were at least able to operate on his feet.
However, during the surgery, Alex suffered an anaphylactic reaction and shortly afterwards developed a heart problem.
Alex was in Birmingham Children’s Hospital for 31 days, 25 of them in Intensive Care.
As he will not be able to have future planned surgery on his feet, it is important that Alex receives intensive physiotherapy to give him the best chance of being able to walk as he gets older.
Charlotte says: “Needless to say, Alex’s feet operation will not be repeated. It is imperative that we do everything we can to help Alex. The NHS Physiotherapists are great but they have large case loads.”
So, Alex’s family and friends are taking part in Steps For Steps to fundraise for extra physio for Alex. With a target of £2000 any extra funds will be used for equipment and therapies for both boys.
Dad Chris was joined this weekend by friends Mark Taylor and Rob Ayre for a 24 mile walk between Birmingham and Worcester universities.
On 3rd March, supporters will be taking part in a Malvern Edge to Edge Ridge Walk. The walk covers 9.3 miles along the peaks of the Malvern Hills.
Support Team Steps for Steps
If you’d like to join Team Steps for Steps on the Malvern Ridge Walk, message their Facebook page for a sponsor form! Or drop them a message if you want to do your own sponsored walk / run / jog / treadmill challenge to support them!
If you’d like to support by donating, visit the Steps for Steps Just Giving Page
Go Team Steps for Steps! 🏃🏻♂️👟