Just a year ago, the Bishops were a family of four: Casey, Joy and their two children, Ellis (4), and Vivian (3). Thinking their plans for two children were complete, Casey had undergone a preventative procedure, but God had bigger plans for this precious family. Much to their surprise, in the summer of 2020, Joy and Casey found out Baby Bishop #3 was on her way. On January 4, 2021, miracle baby Miriam Margaret Bishop made her arrival with a head full of hair and an enormous amount of love.
In the weeks following Miriam’s birth, Joy became concerned with small signs that Miriam was in distress. At only 10 weeks old, Miriam began having mutable daily seizures. After numerous hospital stays and extensive testing, her genetic testing revealed a CDKL5 deficiency. CDKL5 Deficiency Disorder (CDD for short, or just CDKL5) is a type of epilepsy that occurs in about 1 in 40,000 births. Most of these rare cases are a spontaneous mutation, meaning the child does not get it from either parent. It just happens.
The CDKL5 gene is located on the X chromosome and provides instructions for making proteins that are essential for normal brain function and neuron development. Deficiencies of the gene can cause delays and impairment to cognitive, speech, motor, digestion, and vision functioning. CDKL5 is extremely rare and was first isolated as an independent disorder in 2004. The diagnosis, although devastating to the Bishop family, was handled with a tremendous display of faith. Miriam has been a miracle baby from conception and Joy and Casey stay faithful that once again, God’s plans are bigger than their own.
Shortly after Miriam’s diagnosis, the troops started marching in. Joy and Casey’s family and friends began to rally and within a week “Moving Mountains for Miriam” was established. In just a single day hundreds of donations were given to the fundraiser that had been created to assist the Bishop family with medical and travel expenses and for donating funding towards the CDKL5 Deficiency Disorder Foundation. It is often said “it takes a village,” but due to the love that Joy and Casey had shown prior to this challenge they have more than a village, they have an entire army standing behind them. The Bishops and the community of supporters standing with them are armed and ready to take on this disorder and watch all that God will do through this miraculous baby girl.
You can follow “Moving Mountains for Miriam” on Facebook for more information on CDKL5 Deficiency Disorder and to follow Miriam’s progress. While her future is uncertain to us, we know that God has promised to move mountains through faith alone.
CDKL5 has adopted the Starfish as their symbol-this is why…
Adapted from The Star Thrower
by Loren Eiseley (1907 – 1977)
Once upon a time, there was a wise man who liked to go to the ocean and walk on the beach.
One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, so he walked faster to catch up.
As he got closer, he noticed that the figure was that of a young boy, and that what he was doing was not dancing at all. The young boy was reaching down to the shore, picking up starfish and gently throwing them into the ocean, beyond the breaking waves.
“I must ask, why are you throwing starfish into the ocean?” asked the somewhat startled wise man.
To this the young boy replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.”
Upon hearing this, the wise man commented, “But, young child, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!”
As if he hadn’t heard, the young boy bent down, picked up yet another starfish and threw it lovingly back into the ocean. As it met the water, he turned, smiled and said, “I made a difference to that one!”