5-month-old girl with rare genetic disorder hits $2.4 million fundraising goal for treatment
A rare genetic disorder has left a five-month-old Singaporean infant in urgent need of treatment, with her parents successfully appealing for $2.4 million to cover medical costs.
According to Stomper Quan, his daughter Ginny suffers from Spinal Muscular Atrophy (SMA) Type 1, a condition in which most babies do not live past two years old.
A one-time gene therapy infusion with the world’s most expensive drug, Zolgensma, can treat her condition.
“Treatments such as Zolgensma may help improve outcomes if given early,” Quan said.
A distressing discovery
When Ginny was about two to three months old, her parents noticed that her body was “slowly losing the ability to move”. This was even though Ginny was “alert and responsive like any baby”.
Quan said Ginny barely moves her legs, cannot lift or turn her head, has laboured breathing and struggles to swallow her milk, which results in a “prolonged amount of time for each feed”.
According to the Ray of Hope fundraising site, Ginny was admitted to the Intensive Care Unit (ICU) for pneumonia when she was around three to four months old, at which point her parents noticed she had lost even more muscle strength.
“When unsupported, she flops wherever she is placed,” the site wrote, adding that Ginny “still cannot lift her head”.
It was only when she was five months old that doctors “suspected something more serious” and conducted a DNA genetic test, which led to Ginny’s SMA diagnosis.
Quan told Stomp that the family was initially deeply distressed by the news, as it came “completely out of the blue”.
“We manage her energy levels and try to do as much exercises and massages to stimulate her muscles, so as to preserve their function,” he added.
The ‘Baby Ginny Needs Life-Saving Treatment’ campaign was started on March 12. It saw 35,585 donors and hit its fundraising goal on March 21 at around 10pm.
According to Quan, his family is awaiting formal documentation in order to release the funds to the hospital.
Things have not been easy, but Quan and his wife Jenny — both corporate workers in their 30s — credit the support from their family for helping them through this period.
Their parents and siblings would look after Ginny and assist with her exercises when the couple are at work, as infant care is not an option at this point.
Quan noted that the whole family is “very involved and helping in their own ways”, which enables him and Jenny to focus on taking care of Ginny and her needs.
For instance, Quan’s sister helped to manage the fundraising campaign and led outreach efforts so that they could reach their goal.
‘Give Ginny a chance at life’
The biggest motivation behind the campaign is simply to give Ginny “a chance to grow, to sit, to move, and experience the world like other children”.
“We are deeply grateful to everyone who has donated, shared our story, and kept Ginny in their thoughts and prayers,” Quan said.
“We don’t know the donors besides a few relatives and friends,” he told Stomp, adding that the family is “super thankful to these kind-hearted souls”.
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