I’m writing today to ask for your help. Even if the only help you can give is sharing this story and helping raise awareness, I will be grateful. This story is about my friend Jill and her 5 year old son, Dominic. Jill and Dominic are both suffering from chronic Lyme disease. This disease has been devastating for their family. And now, on top of all the pain and suffering they have endured, they are faced with mounting medical bills and no end in sight.
Jill and I with another good friend, Jaime
I met Jill in high school – she was one of the first friends I made after moving to a new school. Shortly after we met, I hooked up with her prom date. In my defense, she didn’t like him anymore anyway and spent the entire night ignoring him! She forgave me, and she’s been one of my best friends ever since. We were roommates in our 20’s for a while. Housekeeping wasn’t exactly our strong point, at times we joked that our apartment resembled a frat house.
We grew up. We moved in with boys. We broke up with boys. We have laughed together and cried together. When I moved to Germany when we were 26, the hardest part was leaving behind my best friends. Their support meant more to me than I ever realized. When I got the news that Jill was going to be a mom I was so happy for her. Jill always knew she wanted to have kids and I knew she was going to be an amazing mother. I hated being so far away and missing the birth of her fist child!
Jill, Jeff, Dominic amd Myles on their wedding day.
Jill was a single mom for the first 4 years of Dominic’s life. She dedicated her life to giving him the best life possible. She out herself through nursing school. I was so proud of her for graduating and following her dream. When I heard that she and Jeff were having a baby and getting married, it seemed like life was finally coming together for Jill. All her hard work was paying off and now it was her turn to enjoy the life she had worked so hard for. She was working as a nurse, had 2 beautiful little boys and a loving husband. She and Jeff were planning to buy a house.
And then came the pain. Jill was in pain for months. At the same time, she was struggling with hyperactivity and other difficult behavior in Dominic. Doctors told her nothing was wrong with her. They treated her like she was an addict looking for pills, rather than a woman in pain searching for answers. Dominic also started complaining of various aches and pains. Finally, Jill was diagnosed with Lyme Disease and shorty after, Dominic was diagnosed. Doctors believe the infection was passed in utero. Her younger son has not exhibited any symptoms yet, but only time will tell if he has also been effected.
Lyme disease is a debilitating infection transmitted through tick bites. Lyme is often accompanied by co-infections, caused by various bacteria the ticks carry. The symptoms vary but include pain, nausea, dizziness, and fever. In children it also causes hyperactivity and inability to focus and learning disorders. Lyme is often misdiagnosed, mimicking symptoms of many autoimmune disorders such as fibromyalgia and in children disorders such as ADHD.
Lyme Literate Doctors (LLD’s) are few and far between. Lyme is often misdiagnosed because it is very difficult to detect in standard blood tests. More accurate testing is extremely expensive and not covered by most insurance plans. Once a diagnosis is finally made, treatment for Lyme is also very expensive. Patients who are able to find a doctor to treat the disease find themselves faced with thousands of dollars in prescription costs and doctors visits. Most LLD’s do not accept insurance, because most insurance carriers do not cover the necessary treatments.
Treatment for Jill and Dominic total $3000/month and they are forced to visit expensive doctors out of state for treatment because there are no LLD’s in Delaware. They no longer have private health insurance – Jill lost her job as a nurse after months of being on short-term disability. They have applied for state health insurance (medicaid,) however Medicaid will not cover any of their treatment because it was received out of state.
A fundraiser has been started with the aim of raising $9000. This will cover 3 months of treatment for Jill and Dominic. They are also applying for various grants and assistance programs available. Unfortunately, the $9,000 needed to get through the next 3 months is just the beginning. This is a chronic disease that may require years of treatment.
In addition to raising money toward immediate expenses, we need to raise awareness. Lyme disease is a real and debilitating illness. Yet our government, insurance companies and the medical community continue to turn a blind eye to the devastating effects of this illness. The only way that will change is if we demand it.
To help with the immediate medical needs of Jill and Dominic, please visit the fundraising page that has been set up:
Learn more about Lyme Disease and how you can help raise awareness, visit: http://lymelightfoundation.org/.
Thank you so much to everyone who has donated or shared. We’ve raised $895 already. It doesn’t seem like much, but every little but helps toward the cost of at least some medication Jill and Dominic so desperately need. Please continue to share and like the fundraising page to help spread awareness and raise funds for Jill and Dominic.