Jarren spent his first 4 months of life in hospital’s neonatal ICU. Numerous tests were done on him before he was formally diagnosed with Congenital Hypomyelination Neuropathy (CHN) which is considered rare in Singapore. Since young, he was frequently admitted to ICU and at each time stayed for months before he could be discharged.
Jarren had to be tube fed until 2 years old, after which he went for an operation to insert a PEG feeding button into his stomach. He underwent a tracheotomy procedure the same year in order for him to manage his secretion better. Due to the severity of his condition, Jarren relies on a ventilator for respirator support. Many rare genetic disorders, including his condition, have no treatment or cure.
RDSS assisted him through “Power for Life” program since 2012. The Society is currently raising funds to help the family in getting equipment to support Jarren with his physical therapy. He is now attending school at Rainbow Centre and the family hopes that he could one day breathe without the support of the ventilator.
RDSS provides the family a platform to share and network with other families and they are now active members of the Society.