Lonnie Mack Johnson IV

Lonnie Mack Johnson IV was born on October 11, 2017 at Swedish Hospital in Issaquah. His parents Lonnie Johnson III and Lindsey Guadalupe could not have been prouder as they brought him home to their Federal Way apartment.

Not only was baby Lonnie so very cute with the biggest eyes you’ve ever seen but he had the calmest demeanor and his parents knew they were so lucky to have such a beautiful and peaceful baby. Quickly they settled into a family lifestyle full of love and joy! Just 1 week after Baby Lonnie was born Lindsey and Lonnie were informed by the newborn blood screening test their baby had Severe Combined Immunodeficiency otherwise known as SCID or Bubble Boy Disease. They were so scared but so thankful there was a “cure”.

Baby Lonnie had to be isolated from the outside world until he would be old enough to have a Bone Marrow Transplant. The three of them spent the best three months of their lives together at their home in Federal Way and only left for the many, many doctors appointments at Seattle Children’s Hospital. As the months passed they were able to celebrate Thanksgiving and Christmas and have brief visits with close family and friends in a very small protected way but it didn’t matter because there were always so many more of these, right? At some point after much testing and needling into Baby Lonnie for blood draws (which was really the only time this baby cried) they got a confirmed date that they would enter Seattle Children’s to prepare for the Bone Marrow Transplant, January 9, 2018 and they were told they would be there 100 days!

Baby Lonnie was always along for the ride, long as he had his daddy and mommy he didn’t care, he was happy being with them and mostly only them all the time. They spent most of these beautiful moments giggling, smiling, bathing lil Lonnie (which he loved), eating and chillin. Preparations for a Bone Marrow Transplant meant more tests, putting in a central line, getting a regular dose of different types of drugs and eventually Chemotherapy right before the transplant. They had searched the Bone Marrow registry of 13,000,000 options but they did not find one match. There were several questionable and unfortunate things that occurred right as the transplant was about to start its course... So much question in this environment makes you wonder if they really know what they are doing?

His daddy Big Lonnie ended up being our little nuggets donor and the transplant took place on February 7, 2018. For our Baby Lonnie the transplant seemed to be a success so what an exciting day! As the days started to pass after transplant our sweet little Lonnie started to feel worse and worse. The doctors and nurses said this was normal and from side affects due to chemotherapy, but they were wrong. On February 23rd our little baby went into the ICU at Seattle Children’s from complications that none of us can really explain and even the Doctors are not clear on why. What brought him there was bleeding from his lungs. We don’t know for sure but Baby Lonnie (or Doodie Bug) may have seen Angels in heaven for the first time this day. Because he is such a warrior and he loves his mommy and daddy so much he fought his way back to being able to see them and all of his grandparents, aunts and uncles and close friends again but this time he couldn’t smile or laugh because he had a ventilator tube in his mouth and he was also hooked up to a dialysis machine due to acute kidney failure.

However, we could all look into his big beautiful eyes and communicate with him none the less because his soul and spirit never ever left him. During his 4 months in the ICU he had some good days and some bad days and possibly one more day where he had a visit from angels. May 2, 2018 Baby Lonnie went into Cardiac Arrest and had to be resuscitaded through CPR for 14 minutes. Once again, his strength and resilience helped him to fight through all odds to see his parents and loved ones again and he came back to us which seemed miraculous to all. However, at some point shortly after that miraculous fight he never gave up strength but realized he wasn’t afraid of the angels. As much as he wanted to stay with his beloved family he just was ready and he went to play with Angels in heaven in a very tragic way on Sunday night June 17, 2018.

His parents were with him the whole way in his fight to stay on earth and they are the most amazing and strong parents. They loved him and held him and caressed him to the very end. He squeezed their hands as tight as he possibly could just hours before he left with the angels and he looked deep into their eyes as he passed and they held him tight and told him how much they loved him one last time.

Our Baby Lonnie, Doodie Bug, Little Nugget, Stinky butt, Lil Lonnie … was a true angel on earth who touched more people than most touch in a lifetime and he is now our little angel up in heaven watching over us. We don’t understand why his life had to be so short but we like to think that he was so special God needed him up there in heaven for a reason. All Baby Lonnie knew was Happiness, Love and strength. He has shown all of us how important these things are and we will live through his example.

Be safe Lonnie and roam free of all the toxins on earth, please show us the signs of your happiness and love every day. We love you sooooooo much. Play in Peace (PIP)