As most of you know, our 10 year old son, William, has Joubert Syndrome.  JS is a rare genetic disorder, with fewer than 1,500 diagnosed cases in the world, that causes a wide range of developmental disabilities.

William was hospitalized in the NICU at birth, suffering from severe apnea and feeding difficulty. He was diagnosed with JS shortly after.  At about three months old, a feeding tube was placed and William's apnea stabilized to the point that we could care for him at home.  We faced many challenges and it was unknown how severely William would be affected by this disease and what he would or would not be able to achieve.

During this difficult time, we were able to connect to a parent support group through the Joubert Syndrome Foundation and have remained connected over the years.

Most recently, we attended the Joubert Syndrome Foundation's family and scientific conference in Phoenix, Arizona in July. This was a unique opportunity to meet other families, talk one-on-one with the very best Joubert Syndrome doctors and researchers from across the country and to be part of a community that understands exactly what it's like to have a child with JS.  And it's fun! The shared love and acceptance of our special kids is palpable at these events and is so uplifting. For a few short days, our kids' differences fade away and it is pure joy for them and for us.

The foundation's role is to support and educate families and to further Joubert Syndrome research and awareness.  It is run entirely by parent volunteers juggling full-time jobs, families and the special needs of their JS kids. The foundation and biennial conference are funded through private donations and corporate sponsorship through volunteer fundraising.

Today, William is happy and healthy and has overcome many challenges in his short 10 years, thanks in part to the Joubert Syndrome Foundation.

Please help us support the Joubert Syndrome Foundation by making a donation through my page. The process is fast, easy and secure. Thanks so much for your support... and please don't forget to send this page to any friends you think might be interested in donating!

Love, Emily and Shane Leizear