Selective Dorsal Rhizotomy (SDR) Everything you need to know!

How much are you fundraising for Wilson’s SDR Surgery?
The fundraising target is £100,000

What will the money raised pay for?
Approximately £50,000 of the £100,000 fundraising target will pay for the initial surgery, immediate aftercare, accommodation and flights to Missouri and first few weeks of intensive physiotherapy, all of this will be in St. Louis Hospital in America. Wilson will require years of on-going physiotherapy, however the first three years will be the most intense, starting off with a minimum of three sessions a week for the first 1 – 2 years. It is anticipated that the cost of this intensive physiotherapy will be approximately £25,000 in year 1, £15,000 in year 2, and £10,000 in year 3. In addition to this any remaining funds will be used to buy any specialist therapy equipment which is required.

How much have you raised so far?
Please look at the current up to date fundraising total on Wilson’s Just Giving page

This is a total of all the fundraising efforts, including online donation, text giving and offline fundraising.

When do you need the money by?
We don’t yet have a date so we are just trying to raise as much money, as quickly as we can! We have been told when we get the date for the surgery we might only have as little as 3 months which is why we need to start fundraising before we get the date of the surgery.

Are you fundraising through a charity?
Yes all fundraising is through Just4Children, a registered charity (no. 1164473) which offers hope to the families of children in the UK with medical conditions who need specialist surgery, treatment, therapy and equipment in order to free them from suffering, giving a better quality to their young lives which would not otherwise be available to them.. All of Wilson’s funds will be kept securely with them and all invoices for his surgery and treatment paid directly by them. Should the family raise in excess of their target, or not need all the funds raised, any excess would go to other families supported by this charity.

How can I donate?
Donations can be made through Just Giving.
You can also text RHIZ63 £5 to 70070

Can I help fundraise?
Yes please!!

There are so many ways in which you can help fundraise. Perhaps you want to do a cake sale, charity bike ride, 5k run, triathlon, bungee jump, abseil, maybe you want to really push yourself and try the Tough Mudder or Skydive. If you are looking for more fundraising ideas click here.

Please contact us on willingwilson@outlook.com or on our facebook page if you would like to help.

To start your own fundraising page to donate to Wilson’s SDR then you can do so by clicking here. This will take you to Wilson’s Just4Children page, click on the fundraise button and follow the instructions from there.

How can I follow Wilson’s progress?

On here! Or you can click on any of our social media icons on the header of this website to follow him on facebook, twitter or instagram.

What is Cerebral Palsy?
Cerebral Palsy is a brain injury which is a motor neurone condition affecting muscle tone and coordination. This results in difficulties with movement, posture and balance. Damage or incorrect development in the motor cortex of the brain leads to abnormal communication between the brain and individual muscles.

There is an almost infinite number of pathways that can be affected making the manifestation of CP in each child/adult truly unique. This also makes prognosis for long term goals, such as independent walking, difficult to accurately predict, particularly in very young children who are still developing key skills.

How common is Cerebral Palsy?
Cerebral Palsy affects about 1 in 400 children in the UK, so that is about 2,000 babies a year. Up to 75% of people with CP have a type of spastic CP, Wilson has this effecting all 4 limbs but more so in his legs than his arms.

Is there a cure for Cerebral Palsy?
Cerebral Palsy is incurable, non-progressive (meaning the brain injury will not change over time) and non-life threatening. However, the effects of CP can change considerably throughout a lifetime. Improvements can be made with appropriate medical and surgical treatments and physiotherapy.

Deteriorations are also common due to the effects of continued spasticity on muscle, tendons and bone, these can be particularly exacerbated by growth spurts, and can lead to a progressive decline in mobility as a patient ages.

How do you get Cerebral Palsy?
Cerebral Palsy is caused by a brain injury or brain malformation that occurs whilst the brain is developing, before, during or after birth. This can result from lack of oxygen (asphyxia), a bleed on the brain (haemorrhage), damage to the white matter of the brain (periventricular leukomalacia) or abnormal brain development (cerebral dysgenesis).

Risk factors that increase the likelihood of Cerebral Palsy include: premature birth (less than 37 weeks), difficult birth, asphyxia at birth, twins or multiple births, infection during pregnancy, intrauterine growth restriction, other placental complications. There may be no obvious reason why a child has Cerebral Palsy.

Why does Wilson have Cerebral Palsy?
It isn’t clear how Wilson got Cerebral Palsy, although it is likely because he was born just over 9 weeks premature and had to be ventilated at birth. He was also born by emergency C-Section and came out severely bruised.

He spent 5 and a half weeks in the NICU (neonatal intensive care unit) at Calderdale Royal Hospital. He had a nasogastric feeding tube and received phototherapy for jaundice, he needed breathing equipment in the early days to help him breathe and was also treated for sepsis.

When was Wilson diagnosed?
We noticed that Wilson was missing key milestones, when at  nine months old he was unable to sit up (normally achieved by six months) and always had his hands clenched so he never played with toys like another baby would, he also still couldn’t roll over at this point. He was finally diagnosed at 13 months after an MRI scan confirmed PVL.

How is Wilson affected by Cerebral Palsy?
Wilson’s first gross motor milestone missed was that he could not sit unaided. He still struggles to do this correctly, due to the spasticity in his legs, but his balance has certainly improved and he now needs less support as he used to.

He has difficulties with muscle control, balance and coordination. His legs have a tendency to be ultra stiff and go rigid in extension, with his ankles locked into a pointed toe position. This makes simple things, such as walking and sitting, very difficult. He is not able to stand without assistance. He wears splints to help support his ankles, feet and legs.

Is SDR a cure for Cerebral Palsy?
No, there is no current cure for Cerebral Palsy. However, SDR is the only treatment option currently available which will permanently reduce or eliminate spasticity in the legs. This results in a dramatic functional improvement and therefore a vastly improved quality of life.

How will SDR change Wilson’s life?
SDR will take away the spasticity in his legs. This will make it easier for him to do normal things like sit up himself, stand unassisted and walk. His gait will be improved, it will remove the ‘scissoring’ action caused by spasticity, he will be less likely to pronate his ankles and less likely to toe walk.

Wilson will have the opportunity to develop more advanced motor skills such as running, jumping, riding a bike, riding a horse. He will be less likely to acquire secondary complications of CP such as tendon and ligament contractions, hip subluxation and arthritis. He will be less likely to require repeated orthopaedic surgeries throughout his life to correct the deformities caused by spasticity. He will be less likely to suffer the pain associated with all of these consequences or the pain of muscle spasms caused by spasticity. In short it will give him greater mobility with less pain. It will transform his childhood and reduce the longterm effects of CP.

What age can you have SDR?
Dr. Park at The St. Louis Hospital performs the surgery on patients from the age of 2.

When will Wilson have SDR?
We are currently in the process of sending X-Rays and MRI scans over to Dr. Park so we don’t yet know the answer for this but we will keep you updated!

What is the recovery after SDR?
This varies slightly according to the hospital, in general though the child is in the Post Anaesthesia Care Unit for 24 hours after surgery then transferred to the Neurosurgery Floor. The patient has an epidural catheter to control pain and a urinary catheter to empty their bladder. After surgery the legs will immediately be less stiff (spastic) but will appear weaker and the child is likely to temporarily have less function than before. Patients are positioned on their backs for the immediate postoperative period and turned every 4-6 hours. They will be on bed rest until the third postoperative day when physical therapy will commence. There are no stitches to be removed.

What role does physiotherapy play after SDR?
After surgery patients are left very weak because the high tone of spasticity masks a fundamental underlying weakness which makes those with CP appear strong when in fact they are just rigid. A prolonged course of intensive physiotherapy is necessary to rehabilitate patients and return them to the level of function that they were before. After this, real progress can be made with continued physiotherapy because motor development is no longer inhibited by spastic muscles. Physiotherapy must be considered as important as the surgical procedure itself and certainly contributes to a significant part of the total cost.

Where is Wilson having his SDR surgery?
Wilson will be having the surgery at St. Louis Hospital in Missouri, America.

The surgeon performing the surgery will be Dr. T S Park who is a world leading paediatric neurosurgeon who specialises in SDR surgery, he has helped thousands of children.

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