“Others First” Friday: Helping A Very Special Little Girl

Every Friday we celebrate “Others First” Friday. This is our chance to use our platform to discuss ways that we can utilize Social Media to literally put others first and help them. Sometimes we even mention specific situations where our community can gather together and do good.

Meet Reagan

Reagan is a very special little girl.

Next month she’ll be turning 2, and what makes this beautiful little toddler special is all that she and her family have gone through. You see, Reagan has had to deal with epilepsy for most of her very young life.

I’ve never actually met Reagan, but her mother was a friend of mine back in Connecticut. She was a student in the youth group for which I volunteered, and the one thing that connected us was that we shared a birthday. I left CT in 2003 and we lost touch. But we have since reconnected on Facebook, and that is how I became aware of Reagan’s situation. I can’t imagine what it must be like for a young couple to have to deal with this. And added to the uncertainty facing their child, Ashley and Ron also have to deal with more than $60-thousand dollars of medical debt not covered by their insurance.

I’ll let Ashley explain it in her own words (added emphasis is mine). And I love the references as to how their various communities have rallied around them:

On December 23, 2008 our lives changed forever. One minute we were excitedly counting down to our daughter’s first Christmas and the next we were thrown into the scary and unpredictable world of Epilepsy. We had taken our daughter, Reagan, to the doctor because of a strange twitch she had developed. We were told she was probably having seizures and were immediately sent to Montefiore Children’s Hospital in the Bronx. We came to learn that not only was our sweet five-month-old baby girl having seizures, she was having over 300 per day.

Although this news was frightening, we were naive and thought, well this isn’t that bad, just give her medication. The cruel reality of Epilepsy is that there is no magic drug. It is such a complex problem covering such a broad spectrum, that it becomes a game of trial and error, a game that is sometimes never won.

Since our first stay in the hospital, Reagan has been admitted nine times and has been on countless medications. When we were first admitted she had stopped responding to us, and was not moving much. She has also had three seizures during which we almost lost her, one this past November where she had to be resuscitated by my husband and I. She has had countless tests; two spinal taps, genetic tests, chromosomal tests as well as tests for every syndrome in the books. We are now in the 70% of people that doctors never find the cause of the seizures. We came to find many shocking facts about Epilepsy, one being that it is the number one cause of disabilities in children and adults.

After a year and a half of this fight, she is moving forward. She still has 30-100 seizures per day and global delays, but she is improving and right now that is all that we can ask for.

During the whirlwind of our past year and a half we have come to learn a lot about Epilepsy and want to do what we can to bring awareness to this illness. We have been very blessed during this time to be surrounded by amazing family and friends. My husband is a firefighter with the FDNY in Engine79 in the Bronx. During our five admissions to Montefiore we never went without a meal. Our firehouse family was there everyday with home cooked meals and encouragement. Family and friends have poured out their love and support and we have also had the opportunity to witness the generosity of strangers. We would not have made it this far, still standing, without all of them, and you.

We had wanted to have a fundraiser in Reagan’s name to raise money for the FACES organization, out of NYU, but due to unmanageable medical bills we will be raising money for those costs. Two of Reagan’s hospital stays were not covered, including a three-week stay at NYU. These combined with many other medical bills has us facing over $60,000 that we have to pay.

We are asking you to please consider Reagan and her story. She is an amazingly tough little girl, who never stops smiling. She is a fighter, and her Dad and I continue to fight for her as well. We would greatly appreciate anything you can donate.

So while I’ve never met little Reagan, I feel connected to her, and I want to help in some way. Let’s see if our community can help this young family climb out of debt and continue to provide this little girl with great medical care.

Here’s how you can help Reagan have an incredible 2nd birthday:

1) First, you can certainly help by contributing financially. It speaks volumes when a community gives, but especially when they give to help someone out that they’ve never met. You can make a contribution online. Additionally, checks can be made out to Reagan Deaso and sent to Reagan’s Hope PO Box 2797, Stamford, CT 06906

2) Make a donation of goods or services – For her birthday party in August, there will be a raffle of items to help raise funds. If you have something you’d like to contribute, Email Ashley .

3) Spread the word – Awareness is key. Please use the Facebook share and Twitter Retweet buttons to get the word out. The more people who know about this, the better the chances of them raising more money. If you get this in email form, forward it.Find any way you can to make people aware of young Reagan.

This is what community does. If you were in the same situation, wouldn’t you want your community to rally around you?

Let’s put “others first” and give Reagan a wonderful 2nd birthday gift!

Tagged as: #OthersFirst, Epilepsy, facebook, FACES, Health care, others first, Reagan's Hope, Seizure, Social Media