Comments

 Hi There,

I had one comment early on, when I started this blog,  from an ALPS mom. It was amazing because we had never ever talked with or met another ALPS patient. It was really amazing to speak for a moment with another mom of a child with this rare syndrome. It made me cry. Though I am very sorry her child too has ALPS, and quite severely, too.

I haven't had any other comments or people sharing - 407 visits, and only 1 comment. I've read that the response rate  is 1 in 1000 visits. Wow, that's low.

I was really hoping for others to share with me. I know we have differences - there are so many AI syndromes around but I think the human experience of being diagnosed with a disease must be similar on some levels, the struggles in trusting self and life. The parenting struggles or looking after kids with a syndrome may vary but there must be similarities, too. How do you help your kids feel good about themselves? Encourage them to keep going and believe in their abilities? How do you offer the child support and still encourage them to keep moving forward?

It doesn't have to be the same. Or maybe you've felt isolated too, - no one to talk to who has experienced similar things. Maybe not. I am hear to share, listen, support and receive support just in the sharing with others.

I would welcome to hear from you. Please feel free use this space to share your experience - I will respond to all comments and posts. I hope you will feel it is a safe place to share, that you will be heard and respected. I will not accept others disrespecting your comments or posting rudely or with no sense of personal responsibility to their own words. Kindness, acceptance, honesty and a hand in support are what I want to extend and ask others to extend.

In spirit,
Cathy