Allegra's SDR Journey

Ali was born 6 weeks early and having failed to meet her developmental milestones she had an MRI at 18 months and was diagnosed with spastic diplegia Cerebral Palsy. Cerebral Palsy does not affect everyone in the same way. For Ali it is mainly her legs that are affected. She has tightness (spasticity) in her muscles caused by abnormal messages coming from her sensory nerves. As a result, she is unable to stand or walk on her own and she uses a walking frame to get around, with a wheelchair for longer distances. 

Ali has recently started junior infants. This has further highlighted her differences when she sees how mobile her friends are but she is absolutely loving school. We are obviously very biased but she is a great, happy, fun loving child that gets on with life with a smile on her face. She attends physiotherapy weekly, along with many other appointments and only rarely complains!

Unfortunately, there is no cure for Cerebral Palsy. There is however a surgery that can help her to gain more independence and ease any pains that she has. This life changing surgery is not available in Ireland but thankfully she can get it done in the UK and this is the purpose of our email.

This surgery, Selective Dorsal Rhizotomy (SDR), will remove the spasticity in her muscles making it easier for her to move, as well as easing the pain that she suffers from. Ali's muscles are underdeveloped and she has formed abnormal movement patterns so following her surgery she will need intensive physiotherapy for two years. 

Ali has been offered a date for this surgery in Leeds Children's Hospital in April 2021.

There are many costs associated with Ali having SDR that we will need to fund ourselves, including:
- the surgery
- spending four weeks in Leeds;
- an intensive post op therapy programme starting with physio three times a week, along with hydrotherapy and occupational therapy;
- purchase of specialised equipment to help with additional work at home;
- three post op assessments in Leeds in the first two years.
We have calculated that in order to provide Ali with the assistance that she needs to get the most out of the surgery we will need somewhere in the region of €80,000. 

If you are in a position to donate to Ali's SDR journey we would be hugely grateful. Honestly, every €1 makes a difference. It is difficult to ask for any contribution but the magnitude of the costs involved make it difficult to finance it ourselves at this stage of our lives.

If anyone would like to know more, the video below is very good and there's more information in the links.
Leeds celebrates 50th SDR procedure
https://www.youtube.com/watch?v=34cRou9l4K0


Thank you
Laura and Neville Murphy