Lucas was born full term, but very little, weighing only 5lbs. He spent 5 days in the special care unit on antibiotics and learning to feed before coming home to all of his brothers and sisters.
Once home we noticed Lucas was missing all of his milestones. He wasn’t babbling, wasn’t learning to roll over or sit, and didn’t really respond to people the way most babies do. I raised concerns at all of his maternal child health nurse appointments, and by 18 months we had a referral to a paediatrician. At this point he had only just learnt to sit, couldn’t stand up and was completely non verbal.
The paediatrician sent us off for hearing tests and did genetic testing. We got his hearing test done and found out Lucas has moderate to severe hearing loss. He now has hearing aids. The same day we got a phone call from his paediatrician to say his genetic results were back, and Lucas has a missing part of chromosome 3. For Lucas, this missing chromosome causes speech delay, developmental delays, learning disabilities and autism like traits.
In May 2019, Lucas got the flu. He had an 8 minute long seizure at home, stopped breathing and this was the start of his epilepsy journey. He has since had dozens of tonic clonic seizures, and hundreds of smaller myoclonic seizures. He is currently medicated, but the seizures haven’t stopped. The seizures aren’t related to his chromosome deletion, so now we are doing more in depth testing to figure out the cause.
Lucas started kinder this year with a full time aide for support and is loving every minute of it. He still has quite a severe speech delay, but is able to communicate verbally now. We have regular therapy for him, and he has come such a long way in the last 12 months. He is super resilient and we are so proud of him.