Elliott Brown

LIVING Kidney DONOR NEEDED

True value of one's life can be measured if the person is able to make a significant difference in someone’s life

Updated on 10/10/24- Elliott has progressed to full end stage renal disease and has to receive dialysis three times a week for 3-4 hrs a day in order to survive without a transplant.

We are still desperately seeking a qualified donor for him via deceased or living donor. We’ve been on this journey actively in transplant mode since Feb 2024 but do not have a viable approved donor yet. We’ve exhausted all outlets for immediate family to donate and sadly have no approved options. Many wonderful souls have so graciously signed up to donate but we don’t know the exact status due to confidentiality , still awaiting an approved donor directly and/or paired exchange.


My name is Elliott Brown and I am an 18 year old rising senior in high school. I live with my family of five including my parents, fraternal twin brother, and 16 year old sister.

As I start my senior year in a couple weeks, I value this final year of high school to make more memories with great friends, celebrate the culmination of my high school career, and align my strengths and talents to a future college and beyond where I can make a mark and difference in the world.

At the same time, I am facing the difficult news and timing that my kidneys are rapidly declining despite years of medical intervention due to a lifelong battle with kidney disease. I am entering the end stage of kidney disease, which means my kidneys will fail and require a transplant or dialysis in the next few months in order to stay alive. The medical team is currently estimating this to occur in December or January.

I have MYH9 disorder, a rare genetic disorder associated with platelet/ blood disorder, hearing loss, kidney disease, and cataracts along with other related health challenges.

We’ve known since I was 2 years old and have been proactively screening and fighting with a medical team for years.

While I’ve been greatly impacted by the adverse effects of the disease, I’ve tried to focus on what I control and have always been able to put in the work, pivot, and keep a positive attitude so that I don’t miss a beat in enjoying life everyday.

I have had multiple challenges to overcome , not been able to play certain sports, ,went fully deaf by age 12 ( hearing with cochlear implant and aid now), have experienced overall physical limitations, and have had to fight multiple health issues. I am regularly monitored by multiple specialists and carry a small pharmacy with me daily to control the effects of kidney failure and its impact across my body.

But I’ve also been blessed with an amazing team of doctors combined with state of the art technology, innovative medications, and a positive spirit.

I’m so thankful for my medical and support team including my pediatrician, hematologist, nephrologist, geneticist, audiologist, endocrinologist, cardiologist, urologist, otolaryngologist, a whole transplant/donor team, and countless teachers, coaches, friends, and family. They have enabled me to lead a wonderful life that I have loved.

As a kid I played in Homerun Baseball where the tag line was “Talent is what you have, Effort is what you give”. I’ve taken that line to heart and known that I can’t change the hand I’m dealt but I can play it with all my heart to win. If you’ve played me in poker, you know!

I’m grateful for the life I’ve been given and truly love living life to the fullest each day. My mother says if this is my energy level at 20% kidney function, the sky is the limit at full function.
Despite my health challenges, I’ve been able to play soccer, baseball, flag football, basketball, track, crew, golf, tennis, pickle ball, skiing, surfing, fishing, boating, biking, and basically anything that screams adventure or nature. My motto is “the grind never stops” and “if you can’t outperform them, out work them”.

I’ve found refuge in continuously learning new things, the solace of nature, and stimulation of sports. When life is volatile, I can always count on a ski slope, fish, or wave to bring me peace and hope. I’ve started teaching kids about nature and these skills because they’ve saved my life and I want others to have the same as they navigate the trials of life. My fishing teaching company, Fishlosophy, teaches life lessons through fishing.

If you know me, you know I don’t want to feel sorry for myself and receive special treatment. I have worked hard and want to grant wishes, not make a wish. So, asking for this is very difficult for me.

With that said, we need one another in life and maybe this is a reminder of our purpose to stay connected, in both giving and receiving service to one another.

I am on the donor list to receive a deceased donor kidney but there are many more recipients than donors available, so I am asking family and friends to think about living kidney donation if you have an interest, are a viable donor, and want to save a life ( mine and/or others).

Long-term survival is markedly improved among patients who receive a donor kidney compared with patients who remain on dialysis. When a recipient has a living donor, the wait time for transplant is shorter and the transplant can be scheduled, which is even more important for my complex disorder. Live organs that are transplanted last longer and function more quickly than deceased donor organs. This helps ease the process and frees up a deceased donor kidney for another recipient. So, you’re saving multiple lives!

Living kidney donation is feasible because you likely have two kidneys but only need one kidney to live a healthy life. A donor must be in good health and at least 18 years old. A dedicated and separate/confidential donor evaluation team will prescreen and determine if you’re a viable candidate. In the first stage of evaluation, you’ll complete an online form which takes 20-30 mins, do a screening call with the donor evaluation team, and then do some lab screenings at your preferred lab.

Those interested in learning more can call the Johns Hopkins Kidney Transplant Office at
410-614-9345 and fill out a confidential
questionnaire on the Johns Hopkins Kidney Transplant site at:
https://jhmi.co1.qualtrics.com/jfe/form/SV_8jqIDdm2KV3sQdv

-Donors cannot be paid for donating an organ
-All medical expenses are covered by my insurance
-If donors contact the transplant center, it is 100% confidential and the transplant team will discuss with only you.

I understand that the decision to become a living kidney donor can be a difficult one and that this is no light ask. My family is being actively screened and we currently have one potential match but the donor team is asking for more and would like to have three viable options to secure the best fit for a successful transplant.

Your safety and well-being throughout the donation process are paramount and I truly appreciate beyond words even the consideration of donation.

Whatever you decide, please know that I appreciate all that my community, family, and friends have done for me to date and I value your ongoing love and support in my journey ahead.

Please feel free to share my story with anyone, as promoting living organ donation will benefit me along with a large community of patients in need of life saving donations.

Thank you for reading my story and potentially saving my life. I promise to pay it forward and make a difference in others’ lives.

Love Always,

Elliott

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