Infant suffering from SMA receives life-saving treatment

GEORGE TOWN: Seventeen-month-old Reese Tan Rui Xin, who suffers from spinal muscular atrophy (SMA), has successfully received a RM9 million life-saving gene therapy.

The girl, who was successfully dosed with the Zolgensma gene therapy at the Universiti Malaya Medical Centre (UMMC) today, is in a stable and satisfactory condition.

According to a statement by One Hope Charity, the Zolgensma gene therapy which cost RM9,139,625 had arrived from United States to UMMC last week.

It said the child had completed several tests and her results were all good. She was then admitted to UMMC yesterday for the treatment preparation.

She was accompanied by her parents, Rachel Chung, 38, and Jason Tan, 47, as well as One Hope Charity chairman Datuk Chua Sui Hau when she was admitted.

Chua had gone to observe the procedure and bring the wishes and prayers to support the girl.

“The one-hour infusion treatment follows the protocol of the hospital and baby Reese was very calm when receiving treatment.

“The long-awaited moment touched Reese’s parents and they were very happy,” the statement said.

On Dec 13 last year, the girls’s parents had appealed to One Hope Charity for help to raise RM9 million after gaining treatment advice from their child’s doctor to treat her with the Zolgensma gene therapy, which would cure the severe and unusual illness.

Within a week, the targeted amount was reached, thanks to the generosity of global citizens.

The mother of two said her daughter was unable to crawl, stand or walk, and could only lie down.

The infant reportedly struggled with breathing and relied on respiratory assistance to chew food, which put her life at high risk.

Reese, who suffers from the rare genetic disease, needed to receive treatment before she turned 2.

“With the blessing from the generous public, she received treatment on time.

“Since the fundraising began, Reese received many blessings and prayers from everyone and she is lucky that everyone is accompanying her through her journey of recovery,” the statement further added, urging the people to continue to pray for Reese.

© New Straits Times Press (M) Bhd

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