White Lodge has simply given me hope where I thought there was none

This is Lucas's story in the words of his Mum Charlotte...

Lucas was born on the 2nd of March 2020, two weeks before national lockdown. Already an incredibly difficult time, without warning turned into a nightmare for my two older children and I, as Lucas became life threateningly ill.

In the first six weeks of his life Lucas struggled to feed from breast or bottle. As a result, he began to lose weight, became jaundice, and eventually stopped waking for feeds altogether. I was constantly seeking help from healthcare professionals to encourage feeding, but unable to have face to face support from our health visitor, and with long waiting lists for our GP due to lock down restrictions, I called 111. Lucas was rushed into hospital with chronic dehydration and I was told he would have only survived a few more hours without medical intervention!

Lucas and I spent just over a month in hospital. After many blood tests, MRI’s and ultrasounds Lucas was diagnosed with several rare congenital conditions.

Lucas has all three features of Septo Optic Dysplasia (SOD), causing severe visual impairment, hormone deficiencies requiring lifelong medications and brain abnormalities contributing towards learning difficulties and behavioural changes in the future. The hormone deficiencies have caused a condition called Diabetes Insipidus which is what caused the chronic dehydration and nearly took Lucas away from us.

Lucas also has severe brain abnormalities called Open lip Schizencephaly and bilateral Polymicrogyria. Causing epilepsy, developmental delay, poor muscle tone, intellectual disability, problems with speech and swallowing.

They can also cause paralysis and Cerebral Palsy. Lucas is still too young to officially confirm a diagnosis of Cerebral Palsy although he suffers with many of the symptoms.

Dealing with Lucas’s diagnosis, lockdown and a marriage breakdown was an emotional overload! I did not know where to begin with Lucas. I had zero experience with disabilities like his and I felt completely lost and alone.

Thank God for White Lodge!

Lucas was referred to White Lodge at around four months old where we met the wonderful White Lodge team including an Occupational Therapist, Physio Therapist and Speech and Language Therapist, they have been a lifeline to our family. Because of them I feel like I can cope, that I am not alone. Most importantly, due to these three wonderful ladies and White Lodge, Lucas has come on leaps and bounds. At the beginning of Lucas’s SOD journey, I was warned by consultants that he may never walk, talk, or even smile. It is because of White Lodge guiding me on how to help Lucas, that he can now support his own head and is able to sit upright with very little support. And he is improving every day.

Lucas still has a very long journey ahead of him and I am so grateful that he has the support of White Lodge every step of the way. We are looking forward to making use of the many facilities White Lodge has to offer like the hydrotherapy pool, Little Stars stay and play group and the nursery.

I could not do this without White Lodge, what was once a terrifying future now feels like a much more positive one.

Oh, and Lucas has proved the consultants wrong on one thing… He never stops smiling!

I am passionate about raising awareness of Lucas’s rare conditions and have set up social media pages to tell his story @LittleLucasSOD