As a parent of William and Hamish, who both have the same extremely rare genetic condition, Mother’s Day holds special meaning for Natalie Watson and her husband Brian.
“Mother’s Day is a day that we remember our beautiful mums and show appreciation for all the little things they do for others with love and unconditionally. It’s a day we give ourselves permission to take a break from doing and just enjoy the moments and relationships we have with our children.
“It’s a day of mixed emotions for me, as are most days, but being a mum is both the best job and the toughest job in the world. In so many ways my two gorgeous boys have changed my life and nothing makes me prouder than being their mum,” Natalie said.
Seven-year-old William and five-year-old Hamish have an extremely rare genetic condition. The brothers are two of only six cases in Australia and 60 reported cases worldwide.
Natalie explained that the condition, Adenylosuccinate Lyase (AdsL) Deficiency, has caused severe progressive neurological damage to both boys.
“William and Hamish are both physically, visually and intellectually disabled. They require wheelchairs for mobility and suffer from daily uncontrolled seizure episodes.
“Brian and I are their arms, legs and voice. We help them with every aspect of daily living, from dressing to feeding, monitoring for seizures and turning them over through the night to make them more comfortable,” she said.
As AdsL Deficiency is so rare, it is hard to have a definitive prognosis. Natalie said that what they know for sure is that the condition is progressing, as both boys’ seizures have increased.
“We have been unsuccessful at controlling them completely with medication and diet modifications. We can’t plan too far ahead, it becomes very overwhelming and heartbreaking. Every day we wish for them to have a better quality of life – Brian and I get busy to make that happen. It can be a real emotional roller coaster and it takes its toll on both of us,” she said.
Very Special Kids has provided emotional and physical support to the Watsons, after the family was referred from the Royal Children’s Hospital. Natalie said that Very Special Kids helps the family with respite care at the children’s hospice and emotional assistance through their local Family Support Worker.
“I know the boys can go to Very Special Kids Hospice and be provided with high quality care. I can relax because I know that they are okay. I know that the nursing staff will make the right decision for the best care of the boys and we are only a phone call away.
“The hospice has a fantastic communal area where all the kids come together, so it’s comforting to know that William and Hamish will be included in all the daily activities, as well as have times for quiet and rest. My boys love the amazing sensory room with music and calming lights.
“The staff are friendly and caring and its very professional run – it feels like it’s their home away from home, which is really comforting for us to know,” she said.
Natalie said that the respite Very Special Kids offers gives her and Brian “a break from being carers and time out to find ourselves again. It gives us all some breathing space. We love travel and have a passion for running. Respite is so important for everyone involved in caring for someone; you have to make it a priority to take that break and recharge”.
William and Hamish have stayed at the hospice while Brian and Natalie have been able to travel and run in some amazing places.
“There is no other respite service like the hospice out there for us. Brian’s family lives in the UK and he wouldn’t get to see his family if it wasn’t for Very Special Kids, as the boys can’t travel on a plane.
“Running for a great therapy for us, as our fitness and attitude towards life is something we can control and in a time when we have no control of our boy’s condition.
“Thanks to Very Special Kids minding our boys, we have been to the Blue Mountains for the Northface 100 and more recently New Zealand and completed an ultra-marathon which was amazing. I really don’t think I could cope without knowing we have somewhere like Very Special Kids to support our family,“ she said.
The Watson family lives in country Victoria, with limited services for hospice respite. Natalie said that she has also benefited from meeting other families from Bendigo who are in a similar situation through the activities organised by Marianne, the local Family Support Worker.
“I have been to morning teas, parent lunches, pamper days and the family Christmas party. There are few families I have connected with and we support each other. I really look forward to catching up with the other parents and having a chance to talk about our similar experiences,” she said.