At just 2 weeks old, Elvia was diagnosed with a rare disorder, Maple Syrup Urine Disease (MSUD) Classic. Since then, Elvia has been in and out of the hospital almost every month, with each admission lasting anywhere between 1 week to 3 months. On top of her underlying condition, Elvia also battles other complications such as Laryngomalacia, Thalassemia Minor and has 3 holes in her heart. Due to her small stomach capacity, she needs to be fed more frequently through a feeding tube.
Elvia was admitted into the National University Hospital (NUH) in July for a pre-scheduled Liver Transplant. For patients with MSUD, the liver has a missing enzyme that is unable to break down components of amino acids. The complication to that is having a restricted diet, being meticulous about protein intake, and weekly blood tests to prevent a metabolic crisis which could damage the brain or result in death. While the transplant is not a be-all-end-all solution, it gives Elvia and her family hope that she may be able to lead a normal life, and to live without unknown fears.
During Elvia’s 1 month stay at NUH, her mother, Felicia was offered the use of the Ronald McDonald Family Room and she also eventually stayed at the Ronald McDonald House at NUH. Thankfully, Elvia’s liver transplant went smoothly and she is now recovering well at home.
Felicia first got to know more about RMHC through a friend who has a special needs child. Recounting her own experience, Felicia shares that she is “grateful to have RMHC’s support through such a difficult period in our family’s lives. It really gave me extra strength to care for Elvia. Both the Ronald McDonald Family Room and House are very conducive and cozy. A comfortable space for caregivers to have short breaks and respite. A place like home that provides for our daily needs such as a kitchen for us to cook, a washer and a dryer to ensure we have clean clothes to wear, and being able to take a shower to stay refreshed. A place where we can be “home” outside of our home. It definitely helped both our physical and emotional well-being.”
When Mira Koh Xin Rong was born, her family's journey quickly became one of resilience and hope. Diagnosed with Tetralogy of Fallot, a form of congenital heart disease, Mira underwent a life-saving heart repair surgery on 15 July. Complications during and after the operation meant that what was expected to be a critical procedure turned into a prolonged and uncertain battle – one that kept Mira in the Intensive Care Unit for five months.
After an unexpected asthma attack, Azura found herself undergoing an emergency cesarean section delivery at just 25 weeks and 5 days of pregnancy.
Siti Nur Ain and Suhaimi are parents to cheerful 18-month-old Amira Mikayla.
