While attending the XP Family Support Group conference, Anna’s aunt Lizzie appeared on the local Fox station. You can watch the clip here: http://fox40.com/2012/11/12/xp-family-support-group/
At the XP Family Support Group conference a few weeks ago, we met some wonderful families who face similar challenges. One of those is the Bricker Family, whose 12-year-old daughter Cameron was diagnosed with XP at age 2. Cameron’s XP is a different type than Anna’s, most notably in that Cameron also suffers neurological problems in addition to the extreme UV sensitivity that she and Anna share.
Cameron was featured recently in a very well done news story on ABC RTV6 in Indiana.
You can read or watch her story at this link.
Cameron’s mom and dad work tirelessly to protect her. They also do a considerable amount of fundraising for the XP Family Support Group. I hear they’ve even set up a raffle where you can win a CAR for supporting XP coming soon!
I’m up late tonight waiting for the dryer to finish, so I can switch the laundry. You see, tomorrow we are going to finish packing and take a flight to Sacramento, where we will meet for the first time other families and individuals who also deal with Xeroderma Pigementosum.
I’m nervous and excited at the same time. Questions fill my mind. How different is Anna’s variation from the others? How do we do as parents to keep her safe compared to the others? Will the conference fill me with hope, or will be be heartbreaking getting to know those with more extreme variations of XP? There are about 30 families coming to Sacrament to this gathering. And this is the BIG gathering! It shows you how rare this disease really is.
I do know that I’m grateful to the XP Family Support Group – and mostly Michele Milota. Her passion for helping others with XP is inspiring. I look forward to learning from her and other XP parents. I look forward to Anna playing and meeting other kids who can’t play in direct sunlight. And heaven knows that we can use a break from work!
So I’ll be back with a report (and pictures) from our trip. Bon Voyage!