Campbells Story

​

​Campbell was born early at 35 weeks and was absolutely beautiful. At 4 days old, we went for his first doctor’s visit.  To our horror he had lost 15% of his birth weight.  The doctor was immediately concerned.  He asked me to stop breast feeding him and pump my milk and feed him with a bottle.  He thought his suck was too weak to nurse.  We had many weight checks and Campbell was diagnosed with “Failure to Thrive”.  As a mom of four to hear the words “Failure to Thrive” was devastating.  Campbell continued to be small but he was amazing.  He was so sweet, he loved to watch his brothers and sister and was a really good little baby.  He never cried, smiled all the time, babbled and slept a lot.  When we put him on his blanket he stayed there.  I just figured that he knew he was my fourth child and he was helping mommy.  When Campbell turned 1 we got his immunizations and that’s when our world turned upside down.  A couple of days after his shots he ran the highest temperature that I had ever seen.   The doctor said some babies have fevers after the shots.  So we took him home and eventually the fevers were gone but so were the smiles and all his milestones of development.  Our journey was just beginning.  At his 18 months old well check the doctor saw our son and gave us a referral to the Melmed center for being “At risk for Autism”.  My world crumbled.  I went home and rocked my baby and prayed.  I worked my buns off trying to stimulate my son.  I wanted to see him smile.  I wanted to hear his precious voice.  I wanted to see him point, and wanted to see the sparkle come back to his eyes.  I was out to prove that our doctor was wrong.  We would go to Melmed and they would say that everything is ok and that Campbell just hit a bump in the road and is fine.  Well the appointment with them did not go like that.  Campbell was still unresponsive, he was tiny, he didn’t babble, he didn’t smile and he rocked back in forth in my arms.  When they watched him play all he did was line up the toys.  Campbell was evaluated by the State of Arizona to get him into therapy which was a shock.    Campbell qualified and was immediately in physical therapy, speech, occupational therapy and had a developmental therapist who was trying to teach our son how to play.  We did hours of therapy every week.  One day when speech was working with Campbell on drinking from a cup, she witnessed Campbell swallow wrong and silently aspirate in front of her.  She then asked to go to a doctor’s appointment for Campbell.  Before I knew it, we were having a swallow study and it confirmed Campbell did silently aspirate.  We had to thicken all liquids to nectar thick and Campbell stopped drinking.  He would watch us make his drinks and he wouldn’t touch it.  His weight loss continued and we were sent to the GI doctor.  She mapped his weight and size and then asked us to document his food intake, so we recorded everything.  We then heard the words “feeding tube.”  I panicked again.  How did this happen? August 17, 2010, our son got a feeding tube.  We were hurled into a new world of pumps, beeps, nighttime feeds and sticky stinky formula.  So with all this new intervention our son still could not gain weight.  During the next couple of years doctors were added by our new neurologist.  I thank the Lord daily for our Dr. Sweetman whom the Melmed center wanted us to have.  She followed our son very closely.  She noticed that he had lost his reflexes and noticed how tired he always was.  She ordered blood tests, MRIs, muscle biopsy’s, EMG’s all because she wanted to help us help our son.  All of the tests were negative.  Dr. Sweetman was the first to say that we needed to fly to Atlanta and meet with this amazing doctor whom was known for a disease called “Mitochondrial Disease”.  I went home and looked up Mitochondrial Disease and was shocked at how many of the symptoms our son had.    I felt for the first time we might be on the right path.  We contacted Dr. Kendall and made an appointment.  We held our first “Campbell’s Crew” garage sale and raised the money for the appointment.  Dr. Kendall reviewed the 100 pages of doctor’s notes.  She became the coordinator for Campbell’s overall needs.  Additional changes added another tube for emptying Campbell’s bowels, braces on his legs and back, a wheelchair, a cough assist, an oxygen concentrator, and a pulse ox that beeps when Campbell’s oxygen drops too low.  In the middle of all this, Dr. Sweetman passed away and we felt helpless.    I prayed for answers.  At our first appointment with CRS, Donna Wallace, interviewed us and reviewed Dr. Kendall’s notes and suggested we meet the neurologist at CRS.  So I did and on July 3, 2014 we were introduced to Dr. Narayanan, Dr. Grebe and Newell Bellnap.  I immediately started to cry as I knew from some of my mommy groups that these are the doctor’s that I had been praying for.  They were Campbell’s “dream team.”  We were invited to join TGen’s Rare Childhood Disorder study.  We don’t have answers yet for what has caused our son’s illness.  He is treated for Mitochodrial Disease as it fits him best, but I have Hope because I know that the doctors at TGen have my son’s health care in their hearts.  I am forever grateful!  So please donate to this amazing organization and your dollars could end up finding a cure for a precious child.  Thank you!