Two sisters, One journey. Cure Krabbe Disease‼️

A Mothers Nightmare

As many of you may already know, my sister and her family have been dealing with a tragedy no mother would wish upon anyone to ever have to go through. Unfortunately, these are real life situations many others may experience as well and just cannot be controlled by our own will. For those who are unaware I would like to share their story with her permission of course, and hopefully bring awareness of a rare genetic disease called Krabbe Disease. Most importantly encourage many moms to always go with your gut instinct.

In February of 2022 my sister gave birth to a beautiful, healthy baby girl and named her Kamila. She was perfectly fine reaching all of her milestones and then some during her first 9 months of being born. It wasn’t until she got caught with Parainfluenza that complications then started. My sister insisted on getting second opinions as she just had the feeling something was not right with her baby. She spent many weeks in and out of hospitals with my niece Kamila when she found out she was pregnant again with her 5th baby. After many seizures, constant sickness, doctor visits, and little by little losing her posture no doctor could give my sister the answers she needed for her baby girl. At 1 year of age Kamila is still not able to hold her head up like she used to, nor hold her own bottle, she has lost all ability of being able to sit on her own or hold herself up. She is no longer able to say mama or dadda, she is struggling to latch on to her pacifier and keep her food down, her non-stop crying and little body going in to complete stiffness with constant high fevers while she has these random episodes and Doctors still have no answers.

Physical therapy was then introduced to try to help gain these milestones that she lacked and try to gain her strength back. Not long after seeing no results does she get admitted into Cook Children’s Hospital in Dallas TX, to then find out she has been diagnosed with Krabbe Disease a rare, inherited disorder caused by a broken gene that causes nerve damage and destroys brain cells. No cure has been found for this disease and studies say the lifespan for an infant who has already shown symptoms is 2 years. Although a stem cell transplant within the first weeks of a newborn who has been diagnosed can help slow the progression of this disease , and help to live a longer, healthy life.

Unfortunately, at this point we have been told it is too late to treat my niece and all we can really do is try and make her feel comfortable for the time god decides to leave her with us. Though my sister and her family go through this living nightmare with Kamila, my sister had been made aware of how this can help prevent it being too late for her other baby girl whom only has 3 months left until she is born. The possibilities of her next baby being born with the same disease were very high.

Baby Kenya was born June of 2023. Once again a beautiful, healthy baby girl diagnosed later with the same Krabbe Disease. Actions were taken upon immediately within her 16 days of life. Chemo therapy and the bone marrow transfusion were scheduled in Dallas Tx, at the Children’s Health Medical Center. Kenya’s admission was on July 5, 2023. Kamila along with my sisters three older children drove 6 hours back home with grandma and would stay in her care for the 100 days post transplant. Since no small children would be allowed in Kenyas small atmosphere for the mean time. On July 19, 2023 Kamila got sick and out broke her medication while in grandmas care and was air lifted immediately to the same children’s hospital in Dallas where baby Kenya was also hospitalized. I cannot explain the pain we all felt seeing both of my baby nieces in that situation. My sister and brother in law feeling so helpless for both of their daughters, but they had a whole army and continue to have an awesome support behind them.

Ronald McDonald’s House has been such an amazing support along with the Children’s Hospital. RMH provided housing for my sister and her family along with grandma for the rest of the summer while baby Kenya was to stay under hospital’s care. When school started, my sisters three other children headed back home with grandma, and Kamila stayed in Dallas with mom and dad to be sure she would have immediate access to the children’s hospital in case of any emergencies. Both my sister and brother in law have had to leave behind jobs and family to be with my nieces during these couple of months. While sharing responsibilities, they both have had to alternate turns while one stayed in the hospital with baby Kenya during her post op transplant, and the other taking care of Kamila who is progressing this regressive disease and requires 24/7 attention at the Ronald McDonald House. Although, recently Kenya has been released from the hospital and has now joined her sister at the RMH with mom and dad until fully recovered . We have had help from many immediate family members and friends with donations and prayers and dearly appreciate them all. This has been quite a journey for us all, with many sleepless nights and shedded tears we continue to ask god for the strength we all need for whatever is to come in these next following months.

I am asking for any donations to help eliminate the financial burden my sister and her husband may have, so they can continue to be full caretakers and pay for any expenses that are having to be paid out of pocket for their girls while also having to provide for her other children during this time. While things seem to be going great with baby Kenya, we understand it may not be the same reality for Kamila as she starts to hit closer to her age of 2 yrs. Even though we as a family stand with faith and try to see the positive side throughout this storm, we also prepare ourselves mentally and spiritually. So those who are not able to donate we also ask for any prayers and that you help share my sisters story. Thank you all for taking the time to read hers.