2021 Year in Review

The saying “the days are long but the years are short” is commonly used by parents, but for Batten parents it is particularly poignant. Looking back at 2021, we celebrate the accomplishments of our foundation while noting the changes in Makenzie and Amelia brought on by Batten.

[eraye]

My 7 year old son was diagnosed with juvenile Batten CLN3 last Friday. I have spent the last week absolutely shattered. I am finally ready to reach out to you and was so happy to see in this video you are moving to Chapel Hill, NC- we are located in Raleigh, NC. My son is under the care of Duke and will soon be seeing a pediatric neurologist there. We are waiting for results to find out if our youngest son has this disease as well. I believe my friend reached out to you in my behalf (trying to help me this week because I have been crushed by this- I will look back through our messages because I believe I remember her sending a message from you Karen saying I could reach out when I felt ready. Will be contacting you soon!

[albertocriacaoyrhyryby]

Ola! Minha filha tem 7anos e aos 3 anos começou com as crises .
Ela foi diagnosticada com a doença de batten tipo 7, estou muito aflito porque durante esses dias ela vem tendo muias crises, ela deixou de andar deixou de falar(dont speak), e por fim deixou de ver.
Que associação existe pra lutarmos por essa causa ( doença)?
Felizmente a outra minha fez o exame e nao tem essa doença. Gostaria q entrassem em contacto comigo