Whenever a rare disease family is in crisis, which happens all too frequently, the request for prayers goes out to others, knowing that the response will bring about comfort. Rare disease families pray for each other because of a deep bond forged through understanding the difficulties with which they are all dealing.
There are many different ways that people pray. Some folks pray all the time, and some occasionally. Some attend houses of worship to pray along with a larger community. These houses of worship vary greatly, but the common thread is that the participants believe that there is a power greater than themselves to whom they can turn. Some do not attend formal religious services, but they still believe there is a God who will help them when they ask for guidance. They may not consider themselves to be religious, but are spiritual.
Rare disease families pray for each other because they want to do something positive when there is nothing else they can do. The prayers may take very different forms, and be said in many different languages, but the thoughts are similar. They believe that there is a power beyond our understanding, and many believe that they have experienced divine intervention.
Rare disease families pray for each other because they feel a connection to those who walk the same path as they do. Some pray to God, some to Saints, and some to loved ones who have gone before.
Rare disease families pray for each other because they know there are many limits to the ability to control a situation and they feel a need for guidance when trying to decide which way to turn when looking for treatment.
Rare disease families pray for each other when a loved one is going into surgery. They pray for the surgeons and the medical staff to be successful. Many have shared their beliefs that their loved ones have benefited from prayer.
Rare disease families pray for each other because prayer helps to ground them when they are fearful. It helps them to stay calm during a crisis and emergencies. They pray for the discovery of treatments and cures, and hope to be led to the right people for help. They pray for strength, connections, and acceptance.
Most find prayer to be a very powerful tool, since it not always possible to contact another person, but God is always present. Not simply alongside us, but within us at the deepest part of who we are.
It is interesting to note that on the Facebook page where many rare disease families come together, there are easily accessible symbols for like, love, laugh, wow, sad, and angry, but none for the praying hands that so many rare disease families use on a regular basis. It is too bad that the people who control Facebook don’t realize the power of prayer in the lives of users who either write out the word prayers or go through the extra step to find the praying hands symbol.
Finally, rare disease families sincerely pray with each other to give thanks for the blessings they receive. They appreciate all of the wonderful people who respond to their 911 calls, but they also believe that when the right person shows up at the right time, it really is in response to divine intervention.
About the Author: Denise Crompton and her husband Bob, raised four children, the oldest of whom, Kelley, had the rare disease of Mucolipidosis 3. The many years that they spent caring for Kelley prompted Denise to write two books. Kelley’s Journey: Facing a Rare Disease with Courage chronicles their own daughter’s experiences. Diagnosis: Rare Disease includes some of the experiences of 12 more families, and was written to help raise awareness of all that is involved in living with rare conditions. All of Denise’s royalties go toward rare disease research. The Cromptons live in New Hampshire, where they spend their retirement years enjoying their many grandchildren, while still reaching out to help families with rare diseases.
