Our journey began when Danielle was 6 months old and she was diagnosed with Spinal Muscular Atrophy (SMA) – a rare condition for which there is no cure. This is when my caregiving journey began. Danielle is now 17.
We knew something was wrong as Danielle had missed a lot of milestones when she was a baby, her cries were soft as she didn’t have any strength. We were concerned and asked the paediatrician – a private doctor – who was slow to give us an answer. She just said to give it some time. We have a paediatrician friend who said that we should get her seen at the government hospital. We went there and straight away they referred Danielle for a check-up. Even from the first look the doctors had concerns and confirmed her serious condition.
The doctors gave us this bad news and it really blew our minds. My wife and I couldn’t understand how this had happened to us. SMA is a rare condition in Singapore, there are just a few cases every year.
They didn’t communicate that well, they didn’t give us a good picture, but they told us the truth. They told us that as time went on her muscles would get weaker and it would affect her mobility. They told us Danielle wouldn’t live beyond two years old. We proved them wrong! Danielle is really a fighter, she has pulled through so many episodes. We think the doctors can share bad news better, it can be presented in a different way. It’s not that nothing can be done, full stop, leaving us to pick up the pieces.
When she was younger we were able to take her out and we even took her on a cruise trip. As a parent we didn’t want to confine her. We took her to the zoo and she enjoyed that. She likes to watch show like Peppa Pig , little Einsteins and Animal Mechanicals. She is non-verbal so she talks to us with her eyes.
Danielle has an older sister. She is a student and lives at home with us. She’s not that close to her sister as growing up Danielle spent a lot of time in hospital and she didn’t see that much of her. Danielle is fragile and she’s afraid to hurt her. She knows she has a sister, but not a sister she can play with physically. We just have to live this reality.
She has been getting weaker since the age of 3. Even a simple cough affects her drastically. At any time she can have an episode which needs emergency rescue. She is basically confined to her bed. She has a lot of medical equipment at home, like breathing apparatus and we have to support her with all of this. Danielle can’t take in solid food ,so she is being fed through her stomach by using a pump machine. It’s a mini-ICU in our home. It was a steep learning curve for us as parents to learn how to care for her. It’s a non-stop carousel while we’re still going through the grief and coping with the sadness. We have learned that we have to take care of ourselves to be able to take care of Danielle. A lot of my colleagues, and the public, don’t really understand what we have had to go through when caring for a child with medical needs.
We are all rounders! We can be a doctor, a nurse, a physiotherapist. Too many roles! We also have to be an advocate for her. Every time we go to the hospital we have to convince the doctors that she needs treatment, because we know her better than the doctors. We have to convince them and then they understand.
We had a helper who worked with us for 16 years, she was fantastic. She came in so we could go out to work. But at the beginning of this year she said she didn’t wish to continue so we let her go and now it’s me taking care of Danielle. We also rely on the Hospice Care Association (HCA) in Singapore. They have doctors who come by on request and assess Danielle and deal with issues which really helps us minimise her trips to hospital. Moving her out of the home is a real challenge and we don’t want her exposed to infection in the hospital.
We are glad that we have a group of friends who are supporting us. We know it takes a village to raise a family. Without this we wouldn’t have been able to get through our journey of seventeen years. But it wasn’t easy. In the first three years of caring for Danielle it was like being in a tunnel where we couldn’t see the end.
We have fantastic support in our country from doctors and nurses, but the challenge is that we are not supported financially with equipment and other things that we need. To get any financial support you have to show that you have exhausted all your resources. Medical equipment is expensive and as we are middle class citizens we have to pay out of pocket. When I said it takes a village to support a family, we really relied on our friends to help us get the money to buy the equipment that Danielle needs. Society and government need to understand this is a huge challenge for families like ours.
Written by Frederick Seah
Father and full-time caregiver to Danielle
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