It’s been one year since August Friday the 13th when I got the call that will forever change Wyatt’s and our live’s!  The first thing I responded to the neurologist after he told me the vlcfa blood test came back positive was, are you telling me our child is going to die?! His response was, “unfortunately this is a very fast progressive disease.”  I had nothing else to say. I hung up screaming- Mark was at a side job - I called and all I said was “it’s positive! I knew it! It’s positive! Our son is going to die!” He screamed- he rushed home somehow in a blur! 

Adrenoleukodistrophy was the diagnosis! With Addison’s disease as the side kick.  

Wyatt’s OT at school is the one who found it! She recognized there was miscommunication between his eyes and brain when trying to retain school work.  Pushed us to see an eye specialist who noticed he had swollen optical nerves- who then pushed us to get an MRI and spinal tap! After seeing the MRI and a lesion she referred us to the neurologist who reassured us that this test he is going to test for is very random they didn’t even have the code in the computer to send the blood  to the Mayo Clinic- this disease was very rare (1/15,000 doesn’t seem so rare)! 

I knew all week the Very Long Fatty Acid blood test would come back positive- Mother’s intuition is real!! Friday that phone call came in at 4:30PM after me calling all week,

daily crying begging for them to tell me they had the results!! While waiting on the results from that blood test I had stalked a mother Jillian Smith all week by searching  #ALD  4:35 I messaged Jill and by 4:40 she had sent me the name of her son’s ALD Specialist Neurologist and Stem Cell Doctor in Boston (2.5 from home) By 8:00 Saturday morning we were on a zoom call with the Neurologist and on Sunday a call with the Stem Cell Doctor!  And then A donor match- a 28 year old selfless female! And Wyatt was admitted ready for a stem cell transplant one month later! Jill and Grady have had a major hand in saving Wyatt! 💙

 This year has been beyond hard but Wyatt is alive and thriving just like he was before the word Adrenoleukodistrophy! His dreams of football are crushed and not to be talked about but he is here and healthy and the disease has been Halted!  

Graft vs host disease tried to show its ugly face in his blood work in May so we were back on weekly visits after being cleared from blood work for 6 months just 2 weeks before!  A liver biopsy showed minimal to moderate liver damage from the week of chemo regimen pre stem cell transplant and all the medication post transplant on top of it!! Enter in prednisone! A really really strong steroid!  The yellowing of the eyes cleared up within weeks the blood slowly got better and after 3 months he is finally done with prednisone next week!! 

Wyatt was able to attend summer school this summer and it has made such a difference on his mental psyche!!  We are hearing the big belly laughs that used to come out!  He doesn’t have social anxiety like he was having!! It’s crazy what 9 months of isolation will do to you- let alone a child!  Wyatt is so excited for a redo of 3rd grade as he never started it last year!

Make a Wish, our sponsors Linda and Mike Doyle, BBL Construction and Best Buy helped bring our little boy that’s inside that big tough guy out!! A day of working on construction equipment with the best supportive crew!! Surprised and blown away at home with an 85inch TV - PlayStation- sound bar- lights- gaming chairs -headsets - a huge card from the construction guys- a framed picture of all the equipment and of the crew holding the sign up in his own gaming room!!! So many selfless people in the world!! The day was so perfect  

We can’t thank you enough!! The friends, family and strangers who have supported us- reached out to be a sounding board - someone to watch and listen to us cry begging this isn’t real!  Asking how they can be his donor!! We felt you step up and hold us up!! We never wish anything like this upon anyone but we know we will be right there fighting with you - listening- being there every step of the way just like you were for for us! 

What is adrenoleukodystrophy? Adrenoleukodystrophy (ALD) is a rare genetic condition that causes the buildup of very long chain fatty acids (VLCFAs) in the brain. When VLCFAs accumulate, they destroy the protective myelin sheath around nerve cells, responsible for brain function. The cerebral form shows up in boys between the ages of 4-10.  Early detection is everything! If the disease has progressed too far and your MRI LOE score is over 10 it is less likely you will be a canadate for a stem cell transplant as the disease has already done too much damage! Wyatt’s LOE score was 3-4! Currently only 29 states do a finger prick blood test on newborn babies for this disease!  When you are aware your baby boy has this he will receive MRIs regularly and you will be alerted if any cerebral change has happen early- so saving him is possible!!