One of the toughest challenges any parent can face is hearing that your child will have a disability and complex needs.
For many parents, this news comes as they sit day after day in the Neonatal Intensive Care Unit (NICU), where their child or children are fighting for life. Any parent who has experienced NICU will know the terror, the sadness and the overwhelming mix of emotions that comes with those days; they will also know the incredible dedication, support and care of the exceptional staff who work there.
We spent 142 days in NICU and Special Care (SCBU), watching our darling son battle the odds and endure endless procedures. We were unable to hold him for his first six weeks, he underwent heart surgery at just 4 weeks old (28 weeks gestational age), and he was poked and prodded far more times than we care to remember. In our case, we were also grieving the loss of his identical twin brother, George, whilst also introducing Rupert to his big brother and number one fan, Felix.
We were told very early on that Rupert had suffered a lack of blood and oxygen in utero at the time that his brother sadly passed away. We were told it was a wait and see as to how the injury to the brain would develop and in Rupert’s case, he developed cysts on both sides of the brain leading to extensive bilateral periventricular leukomalacia (PVL). Sadly, PVL can be common in very premature babies and often, though not always, develops into cerebral palsy.
The best advice we were given at this impossibly hard time was to enjoy Rupert and to love and
encourage him to just be him, to be Rupert. There is no knowing what the future will hold but we
decided that day and with the help of very wonderful friends, to do all that we can to make his life an amazing one.
There is no cure for CP, but there is a lot that can be done to help to support Rupert and to maximise his level of both physical and mental function. There are therapies that are not available on the NHS that we would like to pursue, and which are showing promising changes in many children with CP. One in particular is called the Anat Baniel Method (ABM) and we would love to start sessions as soon as possible. The crucial time is now. Like any parent, we just want the very best for him and for his big brother.
Many of the resources and therapies we need are not available on the NHS and they are
expensive. Rupert also needs intensive support at home and we need help from others for his daily
We were so touched and thrilled when some of Rupert’s godparents suggested setting up this trust
for Rupert. It is hard to reach out for help and whilst friends frequently ask what they can do, we don’t often have a clear answer as it seems to change all the time. Knowing that there is a fund and resources available to afford the care and the treatments we need for Rupert will be amazing for us as parents and will be life changing for Rupert.
From the bottom of our hearts, thank you for reading this, thank you for getting involved, thank you for being there for when we may fall – but most of all, let’s go fly with Rupert.