Lachlan was first diagnosed with Early Infantile Epileptic Encephalopathy at two and a half months old, following having seizures from day two of life. Due to his seizures, Lachlan’s brain was unable to develop, causing severe disability and insomnia. Sadly, Lachlan passed away at six and a half months old.
Today, Lachlan’s mother, Claire, is eager to tell Lachlan’s story and spread awareness. It is her hope that she can shine a light on his rare form of epilepsy, so that other mothers who have children with the same condition don’t feel alone.
On day two of his life, Lachlan began experiencing seizures. It took a further eight days for medical professionals to realise the severity of what was happening, and ultimately, Lachlan was transferred to Sydney Children’s Hospital where he eventually received a diagnosis for Early Infantile Epileptic Encephalopathy (EIEE).
“He was diagnosed at two and a half months old. He was seizing from day two of life. It took another 8 days for a medical professional to take me seriously. We ended up in Sydney Children’s Hospital at day 10 where we lived on and off for the rest of his life until he passed at six and a half months.”
During his life span, Lachlan experienced infantile spasms, myoclonic seizures, tonic-clonic seizures and apnoea seizures. These impacted every area of his life.
“Each seizure was damaging his brain, shrinking it so it could not develop. It caused severe disability and insomnia. Constant seizing would leave him sleeping most of the time after each one. Wake windows became less and less during the day. So much so that he needed to be tube fed as he was not awake for feeding and taking medication. In the last month of his life, he was taking 13 different syringes morning and night, with extra at lunchtime and mid-afternoon.”
Before Lachlan’s diagnosis, Claire knew very little about epilepsy. Like many, she had assumed it was a disorder that just resulted in seizures.
“I had no idea how common epilepsy was and how many different types there were. My eyes are now wide open to everything around me. I look at special needs children and adults with a different kind of love in my heart. It isn’t just pity anymore. It’s love. A new form of respect for all those beautiful people living with this awful condition. Especially the babies. EIEE is a very isolating disease. It is frightening and debilitating. You are in a constant state of fight or flight. No parent should ever have to watch this happen to their baby.”
Formerly a Beauty Therapist, Claire has now left her career of 21 years behind. She is now determined to forge a new path where she hopes to make an impact on mothers with similar experiences.
“I want to do something meaningful with my life. I’m not sure what that is just yet, but I want to continue telling my son’s story to raise awareness for epilepsy and to shine light on this rare form (EIEE) so other mothers don’t feel as alone as I did.”
Claire first encountered the Epilepsy Foundation through her general practitioner, who she credits as being a key source of support for her throughout Lachlan’s battle with epilepsy.
“We met by default one day when my son had to have a heel prick at our local doctor’s surgery. A heel prick was to check my son’s phenobarbital levels, and it requires a lot of blood which is
quite painful for a baby. This doctor came to save the day. Cuddle me. Support my son. Tell me I was doing great while I sobbed. She was not our doctor and was not taking on new patients, but thankfully she took us on where she shared with me that her son also has epilepsy. This created a mutual bond and understanding as women… as mothers. This is where our doctor put us onto the Epilepsy Foundation.”
After contacting the Foundation, Claire soon connected with Event Coordinator, Sue. Over the following months, Sue helped Claire set up a fundraising page and organised epilepsy pins for her surprise wedding/naming day, which was purple themed in honour of Lachlan.
“Lachlan held on for our wedding I believe, as he passed away just four days later. His body was shutting down, he lost all his weight and was having to be suctioned 24/7. Sue, again, was able to bless us with personalised epilepsy pins for his funeral where it read, ‘Lachlan Mark Murray. The most loved little boy there ever was’. I am so grateful for Sue.”
On the wedding day/naming day, Claire asked that people make donations rather than give gifts. She was able to raise $13,000 for the Epilepsy Foundation.
Claire wants to ensure others going through similar experiences are taking the appropriate steps to seek answers. She encourages everyone to be kind, never judge and, if possible, offer support.
“There was no cause or finding for my son. I believe there are genetic forms of EIEE, however either way there is no way to test for this and we do not know why it happens. You cannot test in the womb. I believe I felt him seizing once or twice in my tummy towards the end. When I mentioned this to the midwives, they said to come in for a check if I was worried. But of course, you just feel silly. I was a first-time mum. I remember using the word ‘seizure’ as I couldn’t figure out how he was physically moving that much in the womb. I now know that even if I had gone, they never would have found anything. If you are unsure what is happening, and you aren’t sure if you should seek medical advice, film everything. Until you have visual evidence, no one will take you seriously as babies do make funny noises and movements. Catch it on camera and demand and EEG. Advocate for your baby. Be strong. What I’ve taken from all of this is to never judge another human. Always be kind. You really have no idea what people are dealing with behind closed doors. If you are in a position to help another human, do it.”
Donate to support people living with epilepsy, including children like Lachlan, by visiting fundraising.epilepsyfoundation.org.au/donation