Christina was 36 years old when her sixth child was born. Her newborn daughter was different from the any of the others, and as time passed Christina began to realize that her new baby had a severe disability. Caring for this daughter would require Christina to change her life drastically, and those changes would dominate Christina’s life as long as her severely disabled daughter survived.
Not long after Darwin’s theory of evolution began to gain widespread acceptance, the notions like “survival of the fittest” and “the law of the jungle” popularized the idea that ruthless competition determined progress. This was based partly on a simplistic misunderstanding of evolution and partly on wishful thinking of powerful people who wanted to justify their own good fortune. Of course, it is true that competition within and among species is important, but much more recently science has recognized the roles of cooperation and caregiving as being equally if not more important to survival.
Of course, it seems unlikely that that Christina knew anything about evolutionary theory. She simply responded to her daughter’s needs. An older daughter pitched in and helped Christina at times. Nevertheless, most of the caregiving remained with the mother’s job. Christina didn’t let others who were not family members share caregiving responsibilities. She carried her daughter wherever she went, and did the best she could as long as her child survived.
When I read Christina’s story, I thought it sounded she sounded a lot like other parents of kids with severe disabilities that I have known. What was different was where Christina’s story was published; it was in the journal Primates. Christina is wild chimpanzee living in the jungle in Tanzania.This Wall Street Journal YouTube video provides a glimpse of Christina’s life with her daughter. Although this appears to be the first published study of caregiving for a severely disabled infant by chimpanzee, Christina’s caregiving behavior is not unique and it is not exclusive to primates. Caring for a disabled individual has been observed among a wide variety of animals. For example, his story of a pack of Orca’s provides an interesting example of “Killer whales” caring for a disabled pod member by bringing him food because his disability makes it impossible to get his own food.
There is also paleontological evidence of the earliest humans and prehumans caring for severely disabled children; some dating back 100,000 years or more. There are a number of examples of skeletal remains of children adolescents with evidence of significant disabilities have demonstrated that families (and most likely communities) cared for children and adolescents with severe disabilities during the paleolithic era. The skull and spines of these individuals reveal that they lived for many years with disabilities that would have been much too severe for them to survive without the help of caregivers.
In spite of all conflict, violence, and all of our human failings, humans have become the most successful species on this planet precisely because of our powerful will to care for each other. Families and communities caring for children and adults with severe disabilities exemplify this essential human quality.
To all the affected families, to everyone who reads this blog, and to the rest of the world in general. Hope you have a great Christmas, Hanukah, Kwanza, Saturnalia, or whatever is meaningful to you. Some of you will be celebrating, some will be working, some will be struggling today, but I wish you all the best today, and for 2017.
2016 saw lots of progress toward research, but sadly saw too many families suffer the loss of cherished family members. Many more families had children diagnosed with MECP2 duplication syndrome this year. There were many new readers of this blog, and many new members of the MECP2 duplication syndrome Facebook Family Talk Group as well as other groups connecting families.
Best wishes to all the remarkable families that that are committed to caring for family members with severe and multiple disabilities.
26 March 2011 Families of children and adults with MECP2 duplication syndrome have been working hard to raise cash to fund research that may lead to effective treatment. One part of their effort is collecting votes in a contest that will award $5,000 toward this research. With just 4 days to the polling deadline, they have a narrow lead, but competition is stiff. If you want to support their effort, follow this link and vote for Alli Holland’s dream.
Jason Moore created an interactive Google Map of the World indicating where families of individuals with MECP2 Duplication Syndrome live. You can view the map with this link
. If you have a family member with MECP2 Duplication Syndrome, You can follow these directions to add your family location: Continue reading
Here is a one-minute video of our Dave dancing his heart out back in 1992. He couldn’t stand or walk yet and he never exactly learned to crawl but when the music moved him, he could dance for hours.
The scooting movement that he uses in part of his dance is how he got from place to place before he could walk. Of course, he would go in a straight line, when he wanted to get someplace. Circles were strictly reserved for dancing.
If any other families have neat videos of their child with MECP2 Duplication dancing or doing other neat stuff, I would love to include them on this site.
Just a note of appreciation to my own mom, who has long since left this veil of tears, my dear wife, Louise, who has been such a wonderful mother to our two kids, and to all of the mothers who make this world a better place. Most of all, this is a good time to express special thanks to all the moms who go the extra mile for their children who have MECP2 Duplication syndrome (I’m not forgetting the dads… but this isn’t their day) or other conditions that require so much from loved ones. Continue reading
Today, March 26 is Purple Day!
I hope lots of us will be wearing something purple for Epilepsy Awareness Day. The only purple I could find in my wardrobe was this vest that my daughter brought me from Sri Lanaka.
MECP2 Tee Shirts can be ordered through Pam Albert on the MECP2 Duplication Syndrome Website. Some of the proceeds from the shirts will go toward research at Baylor.
Click here to get more information from the MECP2 Duplication Syndrome Website.
Dave is 19 and has MeCP2 Duplication syndrome. Here is a short video we made on Christmas day. It’s included here just for amusement value, but Dave really does teach us a lot. We got him an i-pod touch and some other presents (that we thought were great presents. The only one that he really seemed to like a lot was a bag of potato chips.
We hope your holidays were great ones!