Darcy's Spinal Dorsal Rhizotomy (SDR) Surgery Journey &Rehab

Darcy is our 5 year-old son who bravely battled back from requiring mechanical ventilation after being placed in an induced coma with muliple organ failure at just 12 days old due to the horrific affects of bacterial meningitis and septicaemia. We are incredibly fortunate to have our resilient, gentle and loving son with us today against all of the odds.

Despite this, Darcy's health battle has continued and he now has a life-long diagnosis of Hydrocephalus (fluid/pressure on the brain), along with Quadriplegic Cerebal Palsy and Global Developmental Delay. He has had to cope through a number of lengthy and traumatic stints in hospital for surgeries and treatments in order to manage his multiple conditions and we have a busy schedule of medical appointments each month.

Due to Darcy's presentation of cerebal palsy and severe spasticity, he is due in early September 2024 to have Spinal Dorsal Rhizotomy (SDR) Surgery in AlderHey Children's Hospital in Liverpool. This is a major surgery on nerve rootlets in the spinal canal and has a difficult recovery period. It is made more frightening and complex due to the fact that Darcy was diagnosed with Severe Haemophilia B in 2020 which leaves him with extremely limited ability for his blood to clot. Very traumatically, this has proven life-threatening for him in the past before he was officially diagnosed and with an emergency care plan in place. Darcy will require specialist, regular and life-long treatment for this disorder, which will include placement and management of a central venous line in his chest in the shorter term.

We are extremely nervous going into this surgery in less than 3 months time, but the multi-disciplinary teams involved in Darcy's care agree that this surgery should be performed. Darcy is struggling with increased discomfort from the tightness in his lower limbs, as well as worsening deformity and contractures in his feet and ankles. The SDR surgery in September will aim to improve Darcy's quality of life; sleep, painful spasms, self-care abilities, mobility, energy levels and physical endurance.

We are fundraising because we recognise that we need some support for the following reasons:

-Predominantly to help make possible attending intense rehabilitation courses and/or additional physiotherapy and hydrotherapy sessions for Darcy to support the success of his SDR surgery and give him the required and much needed best chance at reaping it's potential life-altering benefits. Hourly sessions cost between £70-£115 dependant on the form of therapy.

-To help ease costs of regular long distance travel whilst we navigate childcare of of Darcy's younger sister, along with associated costs of living away from home in hospital for a month post surgery. Regular follow-up care will then be required as outpatients. We know we will need to be fully present to best support Darcy's fight back to full health, strength and emotional wellness through another huge medical experience.

It is planned that Darcy will need to undergo further orthopedic surgeries within the next year more locally, focussing on his lower legs; tendon lengthening and to correct soft tissue damage which has occurred up until this point.

We are quite worried about the journey ahead for Darcy and any support you feel you are able to give, no matter how small, would contribute more than we can express in helping alleviate our fears over the practicalities which are hindered by cost. Thank you for your support in reading our page about Darcy's journey.