Fighting for HOPE: Be A Match for Kelsey and Karly Koch

Karly and Kelsey Koch

Kelsey 21 (right) and Karly 15 have a rare genetic immunodeficiency disorder that can be treated or cured through a blood stem cell donation. (PHOTO SUPPLIED)

By Jeremy Hayes, D.C.

On any given day, we are surrounded by viruses, bacteria, and a host of toxins that are not good for our body. They are considered to be opportunistic infections. We also know that every person (yes, you included) has cancer cells in their body. Small minute mutations of cells that, if left to their druthers, would develop into something that no one wants. The wonderful thing about all of this is that the human body has the potential to keep us healthy. It fights off these viruses, bacteria, and cancer cells everyday, silently working as sentinels within our body.

However, this is not so for an unfortunate few. Meet Kelsey and Karly Koch. At first glance you, would see two happy sisters that enjoy life. Kelsey, 21, is a Psychology major. She enjoys dancing, choreography, and enjoys teaching others. Karly, 15, excels in volleyball and dance. She is one of the top players on her volleyball team. She helps teach a pre-school ballet and tap class once a week while she takes 3 hours of dance a week herself. She hasn’t known that she is different, because her friends all love and accept her. Her teachers love to display her great writing skills in class.

Kelsey and Karly both suffer from a rare genetic mutation that was just diagnosed. No name has been attributed to this disease yet, so it is known as Dock8. Dock8 is a gene that has been discovered to carry a genetic mutation that drops out a portion of the gene, and in short, virtually deletes a child’s immune system. Dock8 is in the category of Combined Immunodeficiencies. Combined immunodeficiency is a type of Primary Immune Deficiency Disease (PIDD) in which several parts of the immune system are affected.

As reported in the National Institute of Allergy and Infectious Disease news:

When compared with healthy individuals, the people with DOCK 8 mutations had fewer CD8 positive T cells, immune cells needed to fight viral infections; fewer antibody-producing B cells; and increased numbers of eosinophils—immune cells associated with allergy. According to Dr. Su, these findings indicate that DOCK8 is essential for defense against viral infections and for preventing the development of cancer and allergies.

According to the New England Journal of Medicine, patients suffering form a Dock8 mutation have recurring problems with: sinusitis, ear infections, pneumonia, skin infections, herpes viral infections, Molluscum Contagiosum, warts, eczema, rashes, severe allergies with anaphylaxis; several suffer from multiple forms of cancer.

By the age of 8, Kelsey knew she was different. The kids would not want to hold her hands, because she was different. She couldn’t eat what other kids ate. She had to exclude herself from foods eaten at birthdays or other parties. Kelsey developed a strong skill of coping far beyond her age even to this date. Her doctors are impressed with her ability to handle this at her young age. Kelsey’s passions are dance and music. She has chosen to study Psychology so she can help others deal with chronic diseases and health issues. She is a great role model being the oldest of 6 kids. She has been attentive to her siblings and stops by to see them often. Kelsey graduated in 2006 with honors, but her college career has been a long story of pain and suffering. While most of her peers are having fun and enjoying this time of their life, she is getting sicker and sicker. She must work extremely hard at school and is sick most of the time. She has spent every spring break in the hospital while her friends are in fun, warm places. She plans on finishing her degree when she is better, but for now she must put it on hold.

Karly diligently keeps her medicine regime and is responsible with every task she is given. She spends her spring breaks in the hospital as well as one day every four weeks. Her faith makes her strong. She finds it difficult to watch her older sister go through the worsening of their shared disease, both compassionately and scared that this fate will reach her one day.

Tammy Koch is the girls’ mother. When asked to comment on the girls, she stated (holding back tears), “Being a parent, I’m deeming them perfect. They are obedient, compassionate, responsible, loving, caring, and persevering children. Living with two children having a rare disease affects the entire family, not just the two. We deal with a lot of issues and look to Jesus for our answers. We enjoy and cherish our time together. Children are a blessing from God, and we are truly blessed.”

The girls’ Aunt, Angie Davids, says, “There are currently 11 known cases of what’s now known as DOCK8. Kelsey is the oldest patient living with this, and the next step for her HOPEful recovery is a blood stem cell transplant. Four of the other patients have already passed away and this procedure could provide HOPE for not only Kelsey, but any others who have this rare condition. The need is to find a match who will be Kelsey’s stem cell donor. The selected donor would have no expense for the procedure. They would be administered a medicine for 5 days that brings the stem cells into their blood stream where they can be harvested and given to Kelsey.”

When asked how we could help, Angie says, “Join Be the Match Registry!” In joining ‘Be The Match Registry’, you are not only giving HOPE to Kelsey. The registry is used to find donors for thousands of patients who HOPE for a donor who can make their life-saving transplant possible. They depend on people like you. You have the power to save a life. A local donor drive is planned on December 5, 2009 at Faith Church in Dyer, IN. from 12:00 pm to 4:00 pm. For more detailed information on joining the registry as well as the medical and age guidelines required, visit www.bethematch.org.

In addition to the donor drive, Angie is planning HOPE Fest as a benefit concert on behalf of her family in order to provide funding for the testing kits to join the registry.

There are two ways to give HOPE:

  1. Join the Be The Match registry, and make a financial donation. Each testing kit costs $100. Grants from Be The Match Foundation are covering $50 for each kit. Individuals receiving a kit to be tested will be asked to pay $25 and the remaining $25 will be covered through Angie’s fundraising. Only those who are between 18 and 60 can be a match as well as other medical guidelines that will be posted at Angie’s benefit.
  2. Those who are ineligible to be tested (people over age 60 or having medical conditions that exclude them) can still give HOPE. They could provide financially for someone else to be tested. HOPE Fest will also take place at Faith Church in Dyer, IN on Saturday, December 5th from 12:00pm to 4:00 pm. Several Christian bands from the area will be giving a concert, and refreshments will be served. There will be various types of Christian music throughout the day. At the event, you will have a chance to give financially and join the registry.

Financial donations can also be mailed to 6241 W 135th Place, Cedar Lake, IN 46303. Checks should be made out to “Be The Match Foundation” with “Davids Drive” in the memo line.

Jeremy Hayes is Clinic Director of ChiroOne Wellness Center of Flossmoor