Help Blakelee get to conference
Donation protected
Blakelee is our amazing 17 Month old daughter who has taught us patients, understanding, and compassion for special needs:) as some of you already know Blakelee was born with a rare syndrome called "cornelia De Lange". With this syndrome comes many obstacles and hurdles. You can read about the syndrome on this website http://www.cdlsworld.org We encourage you to visit this site and have some insite into this syndrome that only affects 1 in 30-50 000 children. So rare and hardly ever diagnosed in utero, and often mis diagnosed after birth.
Every two years the Cdls foundation hosts a national conference in a different part of the country. This year it is in Costa Mesa California. The conference takes place June 26th-29th. For this conference, Doctors from around the world who specialize in Cornelia De Lang sydrome come together and attend the conference and us parents of the child affected get to learn about new medical research and attend workshops for the 4 days we are there. The Cdls children get one on one consults with the specialist to set up and individual care plan to bring back home to their doctors to help make sure they get the best care possible.
The conference is amazing opportunity for the parents of the affected child to meet with other parents with the same struggles, learn from others experiences, and just be in the company of those who "Just get it", to feel "normal" for a couple of days. Blakelee's three other siblings will also be attending as we feel it is very important for them to meet and see how other children interact with their special siblings!
We are raising money because we cannot do this on our own. we are a family of 6 with a single income. We are reaching out and asking for your help, as we feel this is soo important for Blakelee's future. We are determined to get Blakelee there one way or another! Thank you so much if you've read all the way to the bottom. I know it was long! We thank you in advance!
Just to clarify, all the funds raised will be strictly used for registration fees, airfare,and accommodations for the Mayr family to attend the CDLS confrence. Any excess funds raised will be donated to the Stollery Children's Hospital, where baby Blakelee spent the first 3 months of her life.
The Mayrs
Every two years the Cdls foundation hosts a national conference in a different part of the country. This year it is in Costa Mesa California. The conference takes place June 26th-29th. For this conference, Doctors from around the world who specialize in Cornelia De Lang sydrome come together and attend the conference and us parents of the child affected get to learn about new medical research and attend workshops for the 4 days we are there. The Cdls children get one on one consults with the specialist to set up and individual care plan to bring back home to their doctors to help make sure they get the best care possible.
The conference is amazing opportunity for the parents of the affected child to meet with other parents with the same struggles, learn from others experiences, and just be in the company of those who "Just get it", to feel "normal" for a couple of days. Blakelee's three other siblings will also be attending as we feel it is very important for them to meet and see how other children interact with their special siblings!
We are raising money because we cannot do this on our own. we are a family of 6 with a single income. We are reaching out and asking for your help, as we feel this is soo important for Blakelee's future. We are determined to get Blakelee there one way or another! Thank you so much if you've read all the way to the bottom. I know it was long! We thank you in advance!
Just to clarify, all the funds raised will be strictly used for registration fees, airfare,and accommodations for the Mayr family to attend the CDLS confrence. Any excess funds raised will be donated to the Stollery Children's Hospital, where baby Blakelee spent the first 3 months of her life.
The Mayrs
Organizer
Mike Mayr
Organizer
