FOR nine-year-old Kaitie Francis, having a rare and incurable disease has meant close to 40 operations in her short life and dealing with 17 specialist medical departments.
The young South Australian girl has MPS or mucopolysaccharidosis type 1, a rare and progressive genetic disorder that is potentially fatal.
She is one of 25,000 Australians suffering with the condition which in her case has caused intellectual impairment, eye and hearing problems, bone and joint malformation and heart and breathing difficulties.
Born with the condition but not diagnosed until age two, her story has now been told in a new book, Kaitie the Courageous.
It tells the inspirational way in which she and others with MPS attempt to live life to the full.
"Kaitie is a remarkable nine-year-old girl. What she lacks in stature she sure makes up for in personality and spunk," her mother Kimberlee said at the book launch in Adelaide this week.
"While her future if full of unknowns, what I know is that Kaitie has a depth of care for her peers that is uncommon for a child her age.
"She has an infectious giggle, a wicked sense of humour and is undoubtedly courageous."
Coinciding with the book launch, the MPS Society has also revived calls for a national rare disease plan to end the disjointed and uncertain care offered to MPS patients.
The society believes there is a lack of coordinated support for people affected by rare diseases and their families.
"Clearly Kaitie, as well as the 1.2 million Australians battling a rare disease deserve to know that they are not alone in their fight," MPS Society national manager Nicole Millis said.
"They deserve to know they have access to co-ordinated care, services and treatments which can improve their quality of life."
Anda sedang membaca artikel tentang
New book tells of child's health battle
Dengan url
http://mesinjahitan.blogspot.com/2014/05/new-book-tells-of-childs-health-battle.html
Anda boleh menyebar luaskannya atau mengcopy paste-nya
New book tells of child's health battle
namun jangan lupa untuk meletakkan link
New book tells of child's health battle
sebagai sumbernya
0 komentar:
Posting Komentar