It started last year in February 2017, with symptoms of headaches, body aches, lack of energy, fatigue, severe abdominal pain, loose and bloody stool and lots of hair loss due to multiple vitamin deficienceies. Mary-Kate went to her Pediatrician a couple of times and was told she’s dealing with severe constipation. Symptoms varied throughout the year coming and going. In December, she became extremely tired, no energy, much more chronic stomach pain, and stools that consist of mostly all blood, which led family to another appointment with her Pediatrician where she ordered stomach X-rays and checking her blood count. Mary-Kate’s hemoglobin was down to a 5 and she had .9% iron in her body, both were extremely low. She was admitted into Floyd Hospital for a week, where she had 4 blood transfusions and had multiple tests ran and was diagnosed with Ulcerative Colitis. Doctors started her on oral meds and steroids, but she still wasn't showing any signs of improvement. The family then requested to see a highly recommended GI Doctor out of Atlanta, for a second opinion. That Doctor looked over her medical records and realizing 100% of her colon is infected with the disease. He recommended Mary-Kate stay on high dose of steroids and changed her treatment to receiving IV Infusions of Remicade, which consist of traveling to Atlanta for treatment. Starting treatment every 2 weeks, then 4 weeks, and would continue treatments every 8 weeks indefinitely. Two weeks after her second treatment and weaning her off steroids with hopes this would help, unfortunately it did not. Last Friday, March 18th, Mary-Kate started losing a lot of blood again and crying with severe stomach pain. She was admitted and is currently at Scottish Rite Hospital. The goal is to try and keep her off steroids, double the dosage of Remicade and receive treatment more often. Mary-Kate’s body is not absorbing the medication like it should for her to go any more than two weeks without treatment.
With that being said, Mary-Kate’s mom, Nikki, is a single Mom of 2 and self-employed as a Hair Stylist. Nikki has missed countless hours of work and the expense of “hospital life” can be costly, but like any Mom, she will do whatever she needs to for her baby girl.
***HOW THIS DISEASE CHANGED Mary-Kate’s life more than just medically***
Mary-Kate had been invited to join her friends at the beach for Spring Break, but due to this last episode she has spent her Spring Break at Scottish rite. At this point she was supposed to be completely off the steroid (which is what had her immune system suppressed so low). Her family had hoped and prayed her treatment would put her in a better place of healing with her disease. We are thanking God she didn’t have this last episode at beach, but she has yet again, missed out on being a “normal” teenager.
This precious 15 years old baby girl definitely deserves a getaway from this curveball she’s had thrown at her and learning she will forever have a completely different “normal” for her life. Ulcerative Colitis is a lifelong condition and struggle, for there is no cure for the disease, just hopes for remission. Mary-Kate’s family has endured many unexpected expense such as; nights at the hospital, prescriptions, treatments, days of missed work and also travel expense to appointments and to treatment. Again, this is a single Mom of 2, self-employed adjusting to this new life.
Outside of Mary-Kate’s disease, you have the reality of a teenager’s life also being turned upside down socially. The doctor put Mary-Kate on hospital homebound for 3 month. This isolated her from friends, normal school events, and going to things she enjoys, because of her low immune system, for the risk of her getting sick would be far worse on her. You can only imagine how devastating this has been for a 10th grader. However, Mary-Kate has handled it like a trooper and realizes her life will never be the same.
Myself, as a Mom of 3 healthy (as of right now) kids, I think we don’t realize how lucky we are to have healthy kids. Maybe even sometimes take it for granted, unintentional. After watching this Mom cry, worry, question why, blame herself, sleep for nights at a time in a hospital chair (not to mention countless hours of no sleep), all the while dealing with everyday stress on top of watching her baby hurt and can do absolutely nothing about it. Knowing if you could take all the pain away from her and put it on yourself you would. While still remaining positive and upbeat to a much confused and hurting sick teenage girl.
However, PLEASE PLEASE PLEASE DO NOT tag Nikki by posting this on any social media. Mary-Kate is very private and let’s face it; we are raised to not talk about our private parts and going to the bathroom is not a topic most teenagers like talking about. Also, anyone that knows Nikki knows she is very private. Nikki is not the type of person to ask for help. She will be overwhelmed seeing how many people have reached out to help them in their time of need.
Please continue to share this link because unfortunately, this disease is indefinite and any help that anyone can offer will be greatly appreciated.
Thank you all for taking the time to read this, it took me many conversations for Nikki to agree to this. She feels likes there are so many others that have it much worse. It's just like her to think about others and want to handle this on her own. This family would give the shirt off their back to help anyone, anytime, so please join me in helping this much deserved family have some financial burden taken off them. I can’t imagine the worry Nikki has for Mary-Kate, then to add the stress of bills (medical and personal) on top of it. Nikki keeps saying “God doesn’t put more on us than we can handle” and she is right. But let’s rally together and show her the many different ways God can and will provide. However, if you cannot afford to give, a prayer is free… The family needs lots of those too.
- Mackenzie Johnston
- Connor Yarbrough
- Donald Knowles
Organizer and beneficiary
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