Fred and I are parents of Michele & Lauren – who were affected by CLN3 Batten Disease. When our daughters where diagnosed our lives turned upside down. So, what do you do? We spoiled our girls with just about everything, especially with LOVE and COMPASSION!! As hard as it is to lose your daughters from a horrible fatal rare disease, we have wonderful memories of Michele and Lauren, and no one can take that away from us. No parent should have to bury their children. Somehow, “WE SURVIVED”!! We also sought comfort in being involved with the BDSRA Foundation and remain so.

Through our journey with Batten Disease, we survived hospital stays, doctor’s visits, battling rights for the disable, schooling, equipment issues, getting the girls around, funeral planning. Issues you don’t think about until we are in it.

One of many things we did was fundraising. Bowl-a-thons, Car Washes, Crafting Items, Batten Blooms created by relatives, Yard Sales, Participating in Batten Awareness Day (5k Run/Walk), Trivia Night Games, Selling Cookbooks, Crocheting Blankets, and attending other Batten Fundraisers, we have done a lot.

Our girls are no longer with us, but we still feel we need to remain involved with BDSRA Foundation and still help fight for a cure and support this humbling organization. Supporting this organization means the world to us and hopefully you will join us in the support too! Yes, we are so very grateful to all the friends, family and strangers, involvements that helped us get through our journey and we pray for all to continue in the future in finding TREATMENTS, SUPPORT and a CURE for all forms of Batten Disease.

Janet Surrey

Parent of Two Beautiful Batten Angels and a Dedicated Batten Advocate for a CURE

Janet and I are parents of CLN3 Batten Disease angels (Michele and Lauren). After we received the diagnosis on our oldest daughter Michele in 1998, we began our journey through Batten Disease. That diagnosis came after several incorrect diagnoses relating to her eyes, which is usually the first thing adversely affected by Batten Disease. As parents we made the decision this was not something to hide. We let family and friends know what was happening. Many people began to show empathy and to lend emotional support. Others were looking for more ways to help. Still others did not know what to say or what to do and remained at a distance. I encourage new families into the Batten world to approach the beginning of the journey differently. Get your family and friends to include your affected child in any activity that an unaffected child gets involved with. Just keep them safe like the other parents keep their children safe. There will be challenges, for sure, but seeing your child happy with other children is the best medicine you can offer.

Sure, there is research going on, and there is hope for the future, but research just can’t say just how far in the future that is. As the disease progresses, doctors treated the symptoms with compassion, medication and medical equipment but there most important instruction was to keep your child happy for as long as you can.

You basically have to jam a lifetime of doing things and going places into a shortened life span. Janet and I did that in every way we could. Somehow one of the things the girls loved was to go the Batten Disease Family Conference each year and we loved being there with them. We met so many special parents and developed great friendships that we still have to this day.

The girls were given the best experiences of playing with other children affected and unaffected and being involved in group activities. In their later stages in addition to continuing playing and group activities they received the best nursing care while still being involved in things that made them happy.

As Janet mentioned, there was fundraising on the home front. We knew as a rare disease there will not be a significant amount of governmental funding, so we formed the NY/NJ Chapter for BDSRA. We and other members did all sorts of fundraiser's and we forwarded funds raised to the national office to be used for research and support. Which brings us to the Fam Fund stories. We still need help to find a cure for this horrific disease. We still fundraise but times have changed in just how to do it. Now fundraising has gone virtual like so many other things. Please remember Michele and Lauren and do whatever you can to keep their fight against this disease toward a treatment or cure alive. Help us keep the BDSRA Foundation the premier support and research organization to fund research studies around the globe to put an end to this disease.

Fred J Surrey

A Batten Advocate for a Cure

Board Member of BDSRA Foundation

Cookbook Fundraiser to Benefit BDSRA Foundation

Delicious Desserts - $10.00

Recipes from Family and Friends

1. E-mail me your address at jsurrey1044@gmail.com.

2. Tell me how many books - $10.00 each $3.00 for shipping.

3. Write checks to Metro NY/NJ Chapter of BDSRA Foundation (will e-mail you my address).

4. Accepting Zelle payments. Will send you info through e-mail.

5. Will mail cookbooks after payment received.

6. Thank You & Enjoy! Janet Surrey – A Batten Advocate for a Cure