In support of Alexis Harley's journey living with Mixed Connective Disease.
Jeremiah 29:11-12 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you.
(The video clip on the left side with the butterfly is dedicated to and represents her journey)
One must stop to reflect on the caterpillar‘s journey and the butterfly’s flight; marvel at the transformation of what (we) can become through challenges. One must change and undergo great struggles at times for a promise that‘s true and just.
Alexis Harley has struggled quietly most of her young years achieving things that appeared to look easy or simple but are taken for granted by the average person ,daily. In September, 2009 her struggle was named: “Mixed Connective Tissue Disease” Overlap.
This disease is rare and even rarer in children. The “overlap” pertains to multiple systemic autoimmune disorders; her’s being Sjogren’s (secondary), Rheumatoid Arthritis, and Raynaud’s. This disease is attacking her connective tissue and impacts areas of her body from her head to toe.
While her pain may vary from site to site; it is pervasive, leaving each day a special challenge. Alexis’ extreme tolerance for pain works for and against her when looking to carryout normal activities or determining when a new symptom started. Flare-ups, when all areas are at there highest inflammation points, render her incapacitated for periods of hours, days or even weeks.
One single disease on its own can be devastating but, the combination requires enormorus amounts of attention and care above and beyond. It leaves us guessing each day as to what it will bring.
Those that have seen Alexis frequently see her like the picture presented on this site.
Alexis wants to be known as: a Christian, determined, smart, happy, beautiful young lady with great hopes and prospects for her future. She wants no pity and faces her challenges with grace and acceptance, quietly. The suffering is left in the shadows and is endured in the presence of others: relatives, friends, teachers and even medical professionals.
The few that know her trials and impact of her disease are truly amazed at her strength, accountability to her studies and determination to do those things that she enjoys (gymnastics, when ablem and friendship building). She carries herself with a picture of health and is supported by an excellent medical team who cares for her as one of their own.
Unfortunately, the current method of treatment is no longer, sustaining: providing the quality of life in her young years nor is good for her immediate future and longterm outlook. The time has come to advance her treatment levels.
She has been on methotrexate (chemotherapy) low doses for almost a year with a host of other medications that have failed to reduce her chronic pain to acceptable levels and contain the impact of the disease. In addition, there are long-term implications of the drugs apart from the immune disorder.
We have prayed and weighed the prospects of more advanced and aggressive treatments which unfortunately come with their potential risks and side effects.
In approximately one month Alexis will go through infusion of two types of chemotherapy; Rituxan and Cytoxan. While this method has had some proven success in patients with other types of autoimmune such as SLE, one of the risks in the use of the cytoxan drug is infertility. This risk exists for all of those who use this drug and is apart from the disease itself.
Her treatment plan will be administered over a 18 month period and includes:
Step1: Rituxan and Cytoxan administered twice over a two week period
Step 2: Repeat step 1 in 6 months
Step 3: Repeat step 1 in 6 months
Step 4: Wait for the results and adjust accordingly
We are asking for your support in raising funds toward learning about her disorder and to preserve her choices by increasing her chances of having children of her own later in life should the treatment render her infertile. This is the only concern Alexis had in the sea of risks she will encounter. She has endured much over the last several years; however, this is the most emotional step for Alexis.
Oocyte Cryopresevation (Egg Freezing), through means, is a new and very expensive progressive technology used for both healthy women and cancer patients alike.
We have a narrow window of opportunity for Alexis where others that are in life threatening situations do not. While the tables can turn at any point in her journey we want to know that we did everything possible to preserve choices when so little are offered.
Over the years, there have been many people that have asked how they can help only; knowing a subset of what we know today. We had no answers as we faced new facts of her rare disorder and finding daily balance. We can not begin to scrape the surface of the trials endured.
She will no doubt need many things that help to improve her comfort, health or research for her disorder which we may not be able to afford at each turn. So we are looking to focus our efforts toward those things that are immediate and bring the most benefit. We believe this is one of them.
We ask first for your continous prayer and second, if you can, to give what you can toward our goal no matter how little. Each gift is a sentiment of love and therefore equal in support of our family.
We will keep you appised of her progress throughout the year and informed with the latest developments of research in this area. We can not thank you enough for your support whether it is kind words, an ear or shoulder, or the prospects of a gift toward one of our causes small or otherwise.
Blessing to you,
The Harley Family
(Edward, Dana, Alexis and Olivia)
Updates can be found on our blog site: http://monarchbutterflyfunddotcom.wordpress.com/
For those that perfer to support Alexis' Journey with a check, please make check payable/Mailed to:
P.O. Box 246
Oakland, NJ 07436