Willa's Mum's Page
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As a parent or caregiver with a disabled child you can sometimes feel invisible to those around you. They do not see what it takes to change the child, to go to the store, to meet new people or to spend so much time sealed in the world of the hospit…
As a parent or caregiver with a disabled child you can sometimes feel invisible to those around you. They do not see what it takes to change the child, to go to the store, to meet new people or to spend so much time sealed in the world of the hospit…
Profile Information
- Do you live in Pennsylvania?
- Yes
- What PA County do you live in?
- Bucks
- (Please select all that apply) I am:
- A parent or caregiver to a child or youth with special health care needs
- Please share some key areas of interest in the field of child health (for example, transition, autism, special education, etc.)
- Costello Syndrome, rare diseases or syndromes, developmental delay, cognitive impairment, MR, g-tube, early intervention
- If you'd like, please share a little bit about yourself and your child/children.
- Willa, our profoundly dear daughter, was diagnosed with Costello Syndrome at 2 weeks old. CS is an extremely rare, non-hereditary, gene mutation that affects 1 out of every 30 million people. Currently there are 300 people in the world with the diagnosis. www.costellokids.com
- If you'd like, please share something fun, cool, or notable about yourself.
- I write a blog about parentlng a child with complex medical needs at www.livingininvisiblecities.blogspot.com
Willa's Mum's Blog
Living In Invisible Cities
As a parent or caregiver with a disabled child you can sometimes feel invisible to those around you. They do not see what it takes to change the child, to go to the store, to meet new people or to spend so much time sealed in the world of the hospital.
We live in invisible cities: intricate, beautiful, fully functioning worlds that run parallel to this one. I write about my invisible cities here at www.livingininvisiblecities.blogspot.com
I love to hear from other families to explore their wor… Continue
We live in invisible cities: intricate, beautiful, fully functioning worlds that run parallel to this one. I write about my invisible cities here at www.livingininvisiblecities.blogspot.com
I love to hear from other families to explore their wor… Continue
Posted on March 9, 2009 at 5:10pm — 2 Comments
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