After six years of searching for answers, after seeing endless amounts of doctors, going through crazy amounts of testing, receiving multiple diagnoses on top of each other and living with lots of unanswered questions. I was feeling discredited as I was facing my medical peers being reassured nothing was wrong. I am the mother of six children, all of whom have recently been diagnosed with Lyme. I watched as one child became sicker and more symptomatic then the next one, right down the line times six. Then two and a half years ago we got the answer. The Lyme tests started coming back positive and like pieces in the puzzle everything started coming together and things finally started to make sense.
For a moment, it was a pleasant validation of my sanity, which was briefly celebrated, until I learned of “The Great Lyme disease Debate” among physicians. I clearly found out right away how easily this diagnosis could be laughed off like it was nothing more than a rite of passage and would be eradicated by dinnertime.
Hundreds of thousands of dollars later in debt and a whole lot wiser, we learned there was more to it. No tick, no flu like symptoms, no bull’s eye rash… no clue.
What’s happening is heart breaking to watch as they fade away slowly. Our straight A kiddos who cannot recall simple math, or our sweet sons who become aggressive and violent because of brain inflammation or our daughter that constantly cycles into anaphylactic reactions despite being on triple therapy and staying close to living in a bubble. The sudden onset hearing loss with three of them, they all have a laundry list of Food Allergies, Gut Issues, Chemical/Environmental Sensitives, Heavy Metals, Mold, Parasites, Bowel/ Bladder issues and the list goes on and on like crazy.
The one constant throughout this battle is that our kids have really been there for each other. They are Amazingly Strong, Brave, Smart, Funny, Kind, Young People with an Incredible amount of Fight in them, who work and play until they just can’t anymore. They taught us what it is to truly listen.
Sean is 18, just graduated high school. He is interested in becoming an attorney and fighting for people’s rights. He will thrive at that, as he can be quite argumentative and persuasive. For now he will be hanging out at home, going to community college until he is strong enough to live on his own.
Jack is 17 and will be starting his senior year in high school. He is interested in going into education or the medical field. Whatever he chooses to do, his compassion and strength will be a great asset in any environment. People are draw to his kindness. He taught me patience.
Dylan is 15 and going into his sophomore year in high school. He has not been in school for the past two years due to severe complications from the Lyme Disease and he misses it greatly. His strong will to make the best out of really cruddy situations is impressive. His life experiences so far have already given him a unique insight on the needs of others in unpleasant situations. His empathy and courage is empowering to be around. Whatever he becomes he will be amazing at it.
Bridget and Megan are 12. They are crazy, bubbly chatter boxes who to love to just be kids at this gawky age. They would love to not have to take handfuls of medication several times a day, have a restricted diet and avoid some unpleasant treatments daily. Somehow they fit it all in just so they have time to play. Six months ago, Bridget was also diagnosed with mast cell activation disease on top of everything else. This has prevented her from attending school this year due to complications and extreme fatigue with environmental exposures. She misses everyone soooo much. Her plans after knocking these things off her list is to become a nurse and help people get through their illnesses. Megan is hanging in there with her complications but worries more about her twin sister. She is going to be a veterinarian when she grows up and no one is going to stop her.
And Ryan… Our youngest at 9. He is an old soul. Wise beyond his years and was sickly but strong from the beginning. He truly defines why I am the type of nurse I am today. He sharpened my assessment skills and taught me how to truly care for someone by going to the root of the problem, instead of putting a bandage on the symptoms. He taught me to question the “specialists” and gave me confidence to search further for answers even when the doctors dismissed us. Once bright, energetic and a friend to all, his personality has changed drastically over the past six months. The bacteria has caused inflammation and along with it came migrating pain and severe brain fog. Somewhat controlled now but far from being himself. We refuse to watch more of him fade away.
As parents, this is an incredibly humbling experience, as we’ve always focused on teaching our children to help others. It is extremely difficult to reach out in this manner and ask for financial assistance, but we are out of options. At this time in our lives, we need help from others to save our children.
My husband Jim and I have been married for 22 yrs. He is a full time firefighter for the past 23 years and also works a side job, trying to provide enough income to support the medical needs of the children. Despite having three jobs between us and health insurance, medical bills exceed our income last year.
I’m Wendy, I’ve been a registered nurse for nineteen years. Twelve years ago I created the Booty Camp Potty Training Program. Six months ago, I closed the business due to the increasing caregiving needs of three of our children who are too ill to attend school. When I’m not comforting a child, preparing allergy meals, pushing treatments and protocols or making medicine bins up, I am researching constantly for answers towards their recovery.
Our Lyme Journey is pushing us to look outside the country for treatment as many other have found great relief with Stem Cell Therapy for the same issues our children face. Such places as China, Mexico and India are already using stem cell therapy for Chronic Lyme Disease, Incurable Diseases and Paralysis.
There is an urgent need for Lyme Disease education and awareness in the United States. We will be part of that movement. Please help us, so we can help others.
Thank you for taking this journey with us and partnering with our children for their healing. Thank you for giving us Hope.
If you would like to help The Sweeney Family reach their goal of treating all six children with their much-needed Stem Cell Treatment, please visit their You Caring page to make a donation.