Jul 212012
 

Two online friends in America who’ve been a great comfort since Jack was diagnosed are Ashleigh from “As Makayla Sees It” and Amy from “Through the Eyes of Liam”.  Despite Albinism being present in only 12% of patients with nystagmus (in a study by Nagini Sarvananthan – see research published on page 13 of Focus 89 in December 2010 by the UK Nystagmus network), each of our children have recently been diagnosed with it.  I think this coincidence has brought us closer together and it’s been very helpful to learn from each other.

Two recent important events have been;
1) Ashleigh’s trip across country from the West Coast to Ohio to take her daughter to see Dr Hertle.  Makayla will have surgery on 2nd August.  See the High on Hope and Optimism! and We have a Date! posts
2) Amy’s trip to the Noah (National Organization for Albinism and Hypopigmentation) bi-annual conference at St Louis, Missouri.  She’s done a fantastic job taking notes and sharing them on her blog, starting with the Noah Confernce 2012 post on 13th July.   It’s great to know you can order goggles to allow family, friends and teachers to understand how your child sees, and there are many many more tips for bringing up a child with albinism.

A couple of weeks ago Ashleigh set up a Facebook group called OA/OCA Mommas for us and others in a similar situation.  It’s “A place for moms of children with OA (Ocular Albinism) and OCA (Oculocutaneous Albinism) to share tips and resources, and connect!”  The group is growing fast – there are already a number of posts and links to several blogs which I’ve started to read.  We welcome anyone who is interested in joining.

Thanks very much to you both for your friendship and sharing your stories  :-)

  4 Responses to “OA/OCA Mommas”

  1. What a nice post. I am so grateful that I have been able to connect with you and Amy, and all the other wonderful moms. In a world where doctors seem to know so little, it is so helpful to have other moms to share tips, advice and questions with!

  2. Hi Claire, Glad to see you’re making the most of ‘networking': I recognise Ashleigh’s name too from the Facebook mail list.

  3. Claire I agree with Ashleigh whole heartedly, I think we as parents could teach the doctors a thing or two about our kids vision and abilities! I love all you moms like family and cherish and value each moms stories and experiences even more each day!!!

  4. Hi, Greeting to you all,

    I am from India, and under standing the Nystagmus as my son who is 9 year old, also having Nystagmus problem since birth, you are doing great job in the interest of of the society.

    Thanks

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