Planning for Gene Therapy
When we found out our daughter Rylae-Ann was eligible for Gene Therapy, many thoughts began to swirl through my mind. Do we need to quit our jobs? Should we give up our new life here in Singapore and move to Taiwan? What ever was best for our daughter we were willing to do. We felt blessed to have this opportunity. The logistics we could manage, but there was a lot to do to prepare for the clinical trial that was less than a year away. We started by writing questions we had. We then prioritized the list and began tackling them one by one. There were some key factors we were that helped to improve the success of this journey.
We had a great family who supported us from the beginning. My mom who flew to Taiwan to help Rylae-Ann, and Richard’s mom sent supplies from the USA. Reach out to loved ones or even friends. You will need the extra help. If you are loved on, be proactive and tell them they don’t have an option; you are going to help. Sometimes it is hard to ask for help so take the first step.
Hiring a Care Giver
We all need breaks so it was important that there was another care giver to help out. Sometimes it was for household chores or cooking. Other times it was looking after Rylae-Ann. We hired our caregiver from Singapore, and flew her to Taiwan to help. She was caring and kind. She would massage Rylae-Ann daily before bedtime and apply other strategies we learned from therapists.
Budget and Finance
We decided to both keep our jobs. The income was essential and we did not want to tap into our savings. Also, we had just signed contracts to live and work in Singapore, and to break a contract would have had longterm consequences. Our school would have been understanding, but we decided to stay. This meant we would fly to Taiwan and back to Singapore every two weeks.
Housing and Transport
Searching for a house was the most challenging. We needed at least a 2-bedroom apartment. It had to be furnished since we were only there for short-term. We also wanted to rent a place where we were close to the hospital in case anything happened and to help with our family getting our daughter to her appointments easily. We tried websites, but meeting owners was best.
Although we were not with our daughter, every day during her clinical trial stay, we were able to coordinate most of her activities. We planned Rylae-Ann’s meals, physical therapies and hospital visits. Keeping Rylae-Ann healthy and strong was the main focus to get her ready for gene therapy. We made sure she is well-fed and her weight is right for surgery. After her pneumonia emergency hospital admission, we made sure she was always up sitting up right or we are carrying her up right before laying her down.
Do you have questions or need support?
If you need support or have questions about your up coming Gene Therapy or clinical trial, please contact us. We can set up a meeting and help explain our experience and provide suggestions.