FC: Only a Year by Kayla Scott
1: Only a Year by Kayla Scott
2: Our dearest Jael, The day you came into this world was the day your father and I grew stronger. The day we became a true family. You were so little, we were afraid you'd break right in our arms. But, you didn't. You're our strong little girl. Ezra loved you so much, he wouldn't have left your side if your father wouldn't of took him. I remember the first time you opened your eyes, they were a soft blue just like the sky. You were a quiet baby and didn't give us too much trouble like we were expecting you would. We were so lucky for God to have sent us one more of his angels.
3: You were the happiest child we had ever seen. You smiled every second of the day and almost never cried. Even when you stubbed your little toes, you'd look up and laugh it off. We knew it was too good to be true. You began to gain less and less weight, you were getting smaller. Your upper head began to get bigger, your veins could be seen through your skin, and you began to lose your beautiful hair. You were only 19 months old.
4: Your Daddy and I began to worry about your health. You wouldn't gain any weight. So, we hurried you to the emergency room. We were met by Dr. Austerlitz. He's an expert in the field of adolescent diseases. He took one look at you, and he knew. We were told you had Hutchinson-Gilford Progeria Syndrome, A disease that accelerates the aging. Oh, Jael, we were so shocked by the news, but happy we knew what was wrong. Progeria, my sweet, is a very rare and.... fatal condition caused by the mutation of a gene named LMNA.
5: Your condition was first discovered in 1886 by Dr. Johnathan Hutchinson, and later more was learned in 1897 by Dr. Hastings Gilford. It is not known who the first case of Progeria was. Jael, when we learned that you would most likely wouldn't live past the age of thirteen, your father and I broke down. How could we live seeing you suffer through stroke after stroke? How would we survive as you develop atherosclerosis? A child isn't supposed to die before their parents. Instead of sulking around like depressed folks, we did everything with you. Daddy taught you how to play guitar (you are a PRODGEDY!) and you and I played night and day. You love soccer, you fit right in with your team. You're spark waiting to catch fire, my love bug.
6: August 29, 2006 Your first day at the pool. You loved the way the water fell from in between your fingers. You said it was "funny". | December 5, 2006 We went to church and you sang and sang, you sang your whole heart. You have such a beautiful voice. Your condition became more defined.
7: February 17, 2007 We took you to Disney Land, you smiled the whole time. You turned 3 years old! Your hips began to easily dislocate. | June 21, 2007 You showed signs of arthritis. You said it hurt, but Mommy and Daddy made it all better. You wouldn't stop laughing at Daddy's facial expression. Silly Daddy.
8: 2004 | 2008 | We didn't think this would ever happen to our child. But, Jael, we love you just as much as your brother, Ezra. | Progeria is a dominant gene, but can happen to any child. It isn't fully known which parent gives the gene to the offspring. HGPS can be given to any sex. There are only 78 known cases of HGPS, and 50 children die each day of this disease. This condition can happen in any ethnic group, and the children end up looking similar.
9: One month went by after your 5th birthday, and Dr. Austerlitz called the house talking about a new drug that could slow the affects of HGPS. He said it was called the TI drug. The TI drug was originally made for cancer, but is able to reverse dramatic structure abnormalities. But, unfortunately, you had your worse stroke a few days later... You did not survive, my love. | Jael in waiting room at CHKD.
10: We shall always love you, our sweet little Jael Joy McKaully. We will miss you forever plus a day. You made our lives more happy than it could have ever been without you. Ezra says "Goodbye, JJ". But this really isn't goodbye, angel. We will see you when it is our time to go to the Kingdom of Heaven. Forever and always yours, Mommy, Daddy, & Ezra. | Our Little Angel
11: Here lies an angel Jael Joy McKaully February 17 2004 T o March 28 2009 | Every Smile Is The Sun Peaking To See If The Never Ending Rain Has Began To Dissipate | Help find the cure. Go to www.progeriaresearch.org