Desperate for baby Aidan's Diagnosis

My nephew, Aidan May, was born to my brother, Dennis, and his wife, Dawn, on May 5, 2011, 5 weeks early.  He was 3 pounds, 13 ounces and went straight to the NICU where he stayed for a month. 

After about a month at home, Dennis and Dawn started to notice purple spots on his stomach.  They took him to the doctor but the doctor told them not to worry about it and it would go away.  Well, they didn't go away, they began to spread.  They took him to a dermatologist, a pediatric specialist, a Geneticist, an infectious disease specialist, a hematologist, and a rheumatologist and two biopsies later, no one knows what the spots are and none of the specialists have seen them before. 

Months later Aidan's soft spot was bulging so they took him to the ER where they did a cat scan and discovered that the sutures in his head have closed too early which was causing pressure on his brain and his soft spot to bulge.  He was then seen by an eye doctor that determined there was swelling behind his eyes and they had to do surgery.  They broke apart a portion of his skull and moved and reshaped his skull plates to release the pressure on his brain and eyes and then stapled his head. 

In the meantime, the purple spots continue to spread, he has been having inconsolable screaming fits while holding the side of his head, he stopped eating (only drinks Pediasure), he is unable to maintain his body temperature (he can go from 101 to 93 or from 93 to 101 in a matter of an hour which has landed him in the ER), and he is not growing.  They took him to an endocrinologist who determined that he isn't producing enough growth hormones.  They want to start him on hormone shots but he needs an MRI first (which he can't get until March) to rule out a brain tumor. 

At 17 months, Aidan was assessed for therapy and he was assessed at the age of a 9-12 month old.  He is now 22 months old and only weighs 18 pounds!  In fact, his development is so delayed that he has just started to walk and barely talks.  From the day he was born the medical personnel have suggested the possibility of various disorders "“ Downs Syndrome, Dwarfism, OI (brittle bone disease) all proving to be unfounded.  During all of this, Dawn sent letters and pictures to children's hospitals all over the country in hopes of finding out what was going on with their baby boy.  They FINALLY got a response from the Mayo Clinic in Minnesota that wants to see him the week of April 15th for an evaluation and to meet with several doctors to  hopefully get the answers they have been longing for. 


Dawn has been caring for Aidan and often driving him back and forth to Rochester for various different doctor appointments since he was born and subsequently has been unable to work.  They have one income and medical expenses are rising, future medical expenses are anticipated for diagnosis and treatments, and now the expense of this trip to Minnesota will be a one week stay for their family of 4 (Aidan also has a 5 year old sister, Jaylen) to get the answers so desperately needed for baby Aidan.   No donation is too small and your contribution is greatly appreciated.  We cannot thank you enough.

  • Cheryl Dudek 
    • $25 
    • 100 mos
  • Florence Peterson 
    • $100 
    • 100 mos
  • Anonymous 
    • $10 
    • 100 mos
  • Meghan Farrell 
    • $20 
    • 100 mos
  • Ron & Peggy Shrout 
    • $100 
    • 100 mos
See all

Organizer

Tammi May Santa 
Organizer
Wayne, NJ
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