If I could give Arabelle anything for Chanukkah, it would be health and a hope for a future. I hate seeing our little girl going through so much ...
At the age of six, Arabelle Grace's health has deterioated so much to the point to where she needs total care. She is unable to walk, feed herself, and talk. She is now in a wheelchair and has to be fed through a G-tube that was inserted into her stomach earlier this year because she can no longer swallow. It's terrible seeing her like this because up until she was six/nine months old, she was on target developmentally.
Then she started having trouble tracking her eyes and semed to be regressing backwards. We grew concerned, so we took her to her pediatrician, who suspected something else was going on, so she sent Arabelle to a geneticist.
It hurt us to see our baby girl being subjected to so many tests, to see what was going on with her. We cried almost as much as Arabelle did when blood (and other body fluids) were drawn.
The news was not good. The diagnosis: Canavan disease, a genetic disorder found in Eastern European Jews (though other ethnic groups were also affected, but it was most common in Jews) that would lead to incrasing disability, deteriation of mental and cognitive skills, and, ultimately, death before the age of five.
The news crushed our spirits. All hope we had for Arabelle disappeared. We grieved for the child that Arabelle would never become. All we could see was pure hopelessness, wheelchairs, hospital beds, doctors' appointments, and a funeral ... a funeral for our child. She would never learn to write or read, dance, sing, walk, play, or eat on her own. She would never grow up to graduate high school (or college), get married, or have a family, or see grandchildren being born.
It was the worst possible news we could have ever faced as her parents.
Arabelle is now six: she's outlived doctors' predictions by a year and still continues to defy the odds that have been stacked against her. She has grown into a beautiful little girl with a headful of curly, carrot-colored hair, huge dark-brown eyes, and a smile that can light up even the darkest room. While she may not be able to do much, she CAN communicate wit her eyes and her facial expressions and she CAN love others.
Arabelle is absolutely amazing. She brings out the best in people and makes people just how blessed they truly are.
We are in the throes of celebrating Chanukkah, and we have been having fun playing wth her and including her in the celebrations, whether it is at temple or here at home, with her many cousins, her grandparents, and brothers and sisters. (In addition to Arabelle, we have two other girls and three boys: Rebekah, Elijah, Nevaeh, David, Samuel, and Miriam. Arabelle is the third from the youngest, but the one who requires the most attention and care.)
Fortunately, for us, Arabelle was the only one who was diagnosed with Canavan's disease. By a miracle from G-d, the others were spared the pain that Canavan's often brings to families. It has truly been a miracle and we can't thank G-d enough for His tender mercies upon our family. We thank Him every day for sparing our other children the crushing blow of Canavan's.
Well, I have to get Arabelle ready for her night-time feeding, change her diaper, and get her ready for bed. I will write in here again another day; until then, this is Benjamin Rosheimer saying may Yeshua bless you all during this season of lights (Chanukkah)!
~Benjamin, Pittsburgh, Pennsylvania (GO, Steelers!!).