Wednesday, November 20, 2013

My 11 Year Old Super Hero

 "Star War, and Batman, James Bond & Minions"   Justice League, Thor, Telling Jokes,  piano & Singing", "Spending time with Owen, Mom and Dad & Byla  "These are a few of his favorite things!"  

(Remember  My Favorite Things from the Sound of Music??)

(Byla is his pet name for his grandma!)

Nicholas is my 11 year old cousin who is my " Super Hero" because he has been so brave and courageous, after all he has been through.  He has been in the hospital since February after he was diagnosed with aplastic anemia. This is a rare blood disorder that affects red & white blood cells, and blood platelets. Another term for it is bone marrow failure.  As a result of his diagnoses he has had 2 cranial bleeds, and he was in a coma for 3 weeks after the first one.  Doctors didn't give much hope,  but God worked a miracle and his life was spared. After the 2nd which was inoperable, again doctors again gave little or no hope,  but God. . .   performed yet another miracle. As a result his motor skills were affected, so he was sent to a rehab hospital in Charlotte, NC- 1.5 hours away from home.   Since he has been in rehab, he has made a lot of progress, yet his left side isn't moving much.  He has had a lot of set backs, and had to go to the medical wing several times.  Yet, Nicholas has become so brave and remained positive through it all. (Notice the picture with his thumbs up!)  Another cousin went to visit him once, after he'd been very ill and asked him how he was doing.  He said, "I'm doing good, but I'm getting better. I wasn't feeling too well on Friday though."  His grandma Byla told me once he was receiving a very painful injection, and he started singing Oh Glorious Day, and his Mom joined him in the singing.   If you notice in the logo at the top, it has 413 in the middle which is for Philippians 4:13, " I can do all things through Christ who strengthens me." This is his moto! Unfortunately, because the logo was going in the schools, they couldn't put the Philippians on there. Nicholas wasn't too happy about it. He worked very hard in Rehab. despite the terrible pain he had to endure.   What an amazing kid!  I am so proud of him, and that's why he's the super hero.  I know his parents & grandma are also. My late husband , Charles would have been also- they were buddies!
     While in Levine Children's Hospital, he got to meet Ryan Seacrest, and he and his dad performed the " Nicholas & Daddy Comedy Show" on the new  Ryan Seacrest radio station there at the hospital. (The  " Ryan Seacrest " foundation focuses on kids education & entertainment.)  Nicholas memorized the jokes in order, but Daddy needed cue cards! Fortunately, the brain injuries didn't affect his memory or cognitive ability!
     Unfortunately, after a couple months in rehab, doctors determined that the treatments for aplastic anemia weren't working, and he needed a bone marrow transplant. This was delayed a few times because of different complications & set backs in his condition.  In September, Nicholas had 7 days of chemo-therapy prior to the transplant in which his Dad was the donor.  He lost all his blond curls which was not expected, and was very hard on Nicholas.  See the picture of his Dad who shaved his head and joined " Team Nicholas".  He was also joined by his Uncle Andy, & cousin Scott who also shaved their heads.  ( Although my cousin Andy, didn't have much up there to start with! LOL!)   His Mom who had very long curly hair got hers cut real short! He got very sick from the chemo, after the transplant, and that delayed his goal of going home by his birthday on Nov. 1.   He was very upset and mad that he couldn't  be at home for  his birthday, so they asked everyone to send cards, whether you knew him or not.  I think he got 600+ cards, and then the best part is that he was able to go back to rehab the day before his birthday- on Halloween! You can see him in his "Thor" costume. They said he had a great birthday on Nov. 1st, and some family members who live over an hour away came to see him.

Because of all that Nicholas has been through, he will have to have a handicapped van when he goes home, and also needs a service dog.   Therefore, a fund " Friends of Nicholas" has been set up for them to purchase these items, and any long term medical expenses that he will have when he goes home.   I have decided to give 10% of all my sales from the "Holiday Blitz " to "Friends of Nicholas".  To read more about Nicholas and his progress, see other fund raisers, you can go to   ( I will be at Martinsburg Mall for Holiday Blitz most weekends between now & Christmas, and you can find me in the middle of the mall near Kay's Jewelry &  " under the tree" - LOL!)
  Below are pictures of Nicholas playing piano,  sleigh riding with Grandma Byla, with his Dad, Mom & grandma, and best friend Owen!   (Notice the " Star Wars" pillow case I made him.)


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