Exceptional. Parents.
What’s it like to be a parent of a child with a rare illness? Yat Long was born with Mucopolysaccharidosis, a rare disorder affecting his bone structure. Yan Ling developed Multiple Sclerosis (MS) as a teenager. Her father has tried numerous treatments to no avail. Caring for your child is a parental instinct, but for these families, do they have enough support?
不同國家或地區對罕見病各有定義,香港則沒有。朱逸朗患上黏多醣症,進行骨髓幹細胞移植手術,可惜未達預期效果。朱父趁他年紀尚小,希望盡量改善他的病況。成年的鍾燕玲突然患了多發性硬化症,鍾父遍尋療法,徒勞無功。他年事已高,仍盡力照顧女兒。侏儒症家長與醫生合作,成立骨骼病的基金會,聯繫其他家長。他們參加聚會,分享資訊,減少憂慮,各患者也不會感到孤獨。許多父母對子女寄予厚望,這班父母會有什麼願望呢?