Defying expectations, Reece was up and walking just three days after an operation to correct his severe scoliosis. He endured a long and (literally) agonising wait for surgery. The only member of his family to have Marfan syndrome, Reece doesn't let the condition define him! Read his story:
by Donna, Reece's mother
When Reece first had problems being unwell he was constantly in and out of hospital. Eventually I was upset at work. I work for 111 and mentioned all the things going on to one of the nurses, mentioning symptoms including Reece's pigeon chest etc. The nurse said it sounds like he has features of something called Marfan syndrome. WOW he was correct!
The paediatrician in Barnsley at the time did not believe what I was saying because neither I nor Reece's father didn't look as though we had it. I mentioned the pigeon chest, flat feet, high palate, crowded teeth and how tall he was. The paediatrician sent us for genetic testing and it came back that Reece had Marfan syndrome. He is spontaneous. He then arranged to get Reece checked with cardiologists and he has the cardiac problems alongside it. Since his diagnosis I changed paedtricians and we have an amazing one at Pinderfields who sees Reece for cardiology and also sees him for paediatrics.
Reece had to wait so long for spinal surgery. He had been in a brace since he was 4-years-old. They wanted to wait until he had his arterial septal defect fixed. They tried to do the closure by key hole surgery but failed due to the hole being too far down. However, this seems to improved as he had got older. Sheffield Hospital were worried about performing surgery on such a complex case as Reece. They referred him to Leeds who operated within three months of the referral.
Reece is on antenolol for his heart. He also has an enlarged aorta.
Reece has his toes fused three years ago.
Reece's spine was at 111 degrees and they have managed to get it to 33 degrees. We had an amazing surgery and within three days, the physio had got Reece out of bed.
A parent's worst nightmare is your child having surgery let alone a big one like them is he went down at 9am and came put at 18.20pm. I found being honest about how worried we were with the surgery really helped as the doctor made sure he informed us of everything to a point were we had no questions because he had already answered them. Reece is recovering at home he can walk round the house and is walking up and down stairs he was actually doing stairs five days after surgery. It is unbelievable how well he is recovering I thought he would have been bed-bound after this but they actually want the opposite and want you on your feet.
Also as a child I believe they have more support on the ward and you can stay by there side as an adult you would only be able to visit and yoh would be worried about support if they live at home.
We also have a great physiotherapist and occupational therapist with Locala who must have done a lot of research on Marfan syndrome as they are great with Reece. They have got him special seating special bed and they work with school and him closely.
I've always told Reece he can do anything and if other children watching his video (here is the link) will see how much this surgery helps and not to put it of he will undergo more surgeries too he has to have his pigeon chest done too but he needs to recover this first.
This surgery is the biggest he has ever faced and he smashed it!
Donna has kindly share the before and after of Reece's surgery.
