TeamNEGU Blog

At the 8th Annual Gala: A Celebration of Courageous Smiles!, 46 Courageous Kids were in attendance and encouraged to NEVER EVER GIVE UP in person throughout the evening. One of those Courageous Kids is Mikah, who was diagnosed with B-Cell Acute Lymphoblasic Leukemia on September 14, 2018.

Since Mikah’s diagnosis, him and his family try to get out as much as possible, sometimes that means only a drive in the car to pick up or drop off his older brothers or little sister to school. His family was so excited to be invited to attend the Gala and celebrate Mikah, the Jessie Rees Foundation and Courageous Kids around the world together.

Mikah’s mom told us that “When he heard about the NEGU Gala and that it was at the Disneyland Hotel, he was so excited. About three days before we were to leave, he packed his entire suitcase by himself. I had to take a few things out but he basically had exactly what he needed. He packed an alarm clock, a kid’s camera, a few stuffed animals that he has been given since his diagnosis, pj’s and clothing. He zipped it up and kept it at the front door.”

Mikah was even asked to present one of the Jessie awards along with NFL Player Johnny Stanton and Jessie’s brother, JT Rees. Mikah’s parents worked to get him ready to go to be on stage and give someone else an award but, “when Mikah saw that he also got to take home a Jessie Award for being a Courageous Kid he was thrilled! He told us that now he has his own trophy!” He now keeps his Jessie award on the dresser next to his bed and brings it out to share with his home-hospital teachers and family members who have come over.

“One of my favorite moments of the evening was seeing Mikah and his big brother on stage presenting a Jessie award alongside Jessie’s brother, JT, Johnny Stanton and one other Courageous Kid. Prior to the event I was worried that Mikah would be nervous and be afraid of going on stage in front of such a large crowd. I had asked if Mikah’s brother Mattias could help him on the stage. Seeing two of my boys on stage so confident and handsome make me realize how blessed our family is in spite of this horrible cancer journey we are on. Our family has been so incredibly surrounded and cared for during this trial and to see how many people wanted to bring Joy to our family and others was incredible. I have told others that Mikah may be the one with cancer in his body, but maybe we had cancer in our hearts. Allowing people to love on us has changed my heart and rid it of hurt and pain that was there before.” Mikah’s mom said, “My other favorite moment was learning more about Jessie and what an incredible young lady she was. One little girl, who during her own cancer battle, wanted to see that other children have some happiness and joy. It was a lesson for all of us about the power of love and how it has helped thousands of children and their families. Jessie and her beautiful family have created an organization that has and will continue to change so many lives for the good.”

Mikah is an amazing young man and at just five years old, he is wise beyond his years. He has been strong and brave throughout his journey and is helping teach his family to be strong too. He still has at least three years of treatment but, “I see a desire in him to keep going, even with it is hard.” His mom said, “NEGU – Never Ever Give Up, not only gives the message to the child with cancer to Never Ever Give Up, but encourages parents, siblings, family members, friends and strangers to never lose faith. Life can be incredibly difficult and we are never promised that life is going to be easy. We all will come across trials that are going to test us beyond what we thought was our limit. NEGU reminds us to give all that we can and let other’s pick us up when we may not have the strength.”

“Thank you to the Rees family and to everyone who works for, volunteers and supports NEGU. You may not always be able to see each smile that is brought to a child’s face when they receive a JoyJar in the mail, or at their hospital bed or heard the sigh of relief from parents who get financial assistance to help pay the extra bills, but from one mother who has experienced some of that love, THANK YOU! What may seem like a small act to you is certainly not a small thing for a parent who sees their child smile for the first time in days. Thank you for loving our children and our families. Jessie would be so proud to see how many people have followed in her footsteps to share JOY.”

Mikah’s mom reported to us that heis currently in the “delayed intensification phase 2” and should be in maintenance by the end of May or beginning of June.