When Laura and John Woods welcomed their son Lucas into the world in 2011, they were thrilled. They had been recently married and now they had their beautiful baby boy. But as he grew, Lucas wasn’t hitting the milestones that other children were reaching and they began to have concerns.
“We discovered that he had nystagmus in his eyes – a rapid bilateral shaking. By the age of 9 months, he wasn’t sitting or crawling, so we investigated further,” Laura says.
By the time he was 2 years old, Lucas had undergone countless tests with no firm diagnosis. Finally, in January 2014, it was confirmed that their son had Pelizaeus-Merzbacher Disease (PMD), a rare central nervous system disorder that affects coordination, motor abilities and intellectual function. Lucas is fully dependent on his parents for every aspect of his daily life, needing round-the-clock care. Still, Laura says that Lucas brings a lot of joy to his family.
“My husband and I talk about this all the time and we both agree that the best part about Lucas is his smile,” she says. “He’s such a bright little spirit. He has taught us to be patient and loving and not to judge other people’s circumstances because we don’t know what they’re going through.”
This positive perspective has been helpful as the Woods family has grown. Lucas has two brothers, Liam who is four years old and is able-bodied, and Brody, who just turned one in April. When Laura was pregnant with Brody, she underwent testing and it was confirmed at 14 weeks gestation that their third child would also have PMD. It was a hard diagnosis to accept. As Laura reflects on that experience, she says in some ways it was easier with Lucas because they didn’t know that anything was wrong. In other ways, it was helpful to be prepared, knowing what lay ahead.
“Brody is very similar to Lucas. He also has nystagmus in his eyes and has yet to hit his milestones,” she says, gazing into her baby’s face. “But when he looks at me and smiles, sometimes I think he’s saying ‘thank you for keeping me, mommy.’”
Having two children who need complex care means accessing as many resources as possible. Matthew’s House is one such resource. Matthew’s House supports families by providing quality care for children so that their families can get the rest they need.
When Lucas visits Matthew’s House, Laura and John will often do nothing more than hang out. They try to give Liam some dedicated attention. They’ll take Liam on outings that they wouldn’t do otherwise, like going to Castle Fun Park. Knowing that Lucas is safe and sound at Matthew’s House gives them peace of mind and Lucas loves being there.
Wendy Toohey, manager for Matthew’s House, says the staff really enjoy their time with Lucas.
“He’s very animated and engaging,” Wendy says. “And he loves to laugh.”
The staff who care for Lucas are trained in relevant medical and behavioural practices and work with each family to tailor care to each child specifically. This quality care makes a difference to Laura and John.
“I know that when Lucas is there, he is well taken care of. He’s made to feel at home,” Laura says. “Matthew’s House has been amazing for my family.”