March is Trisomy Awareness Month

2013-10-19

March is Trisomy Awareness Month. Alas, I have been knowledgeable of Trisomy 18 for close to six years because of the birth of my grandniece Delainey Belle.

In August 2010 my niece shared with us, “My unborn daughter has been diagnosed with Trisomy 18…it is a fatal chromosomal defect…if she makes it to birth she will not live very long. I will be thankful for every moment with Delainey Belle!!!”

Trisomy was a foreign word to all of us, however, too soon did we come to know Trisomy 18 is a genetic chromosomal disorder which occurs in approximately one in every 3000 live births. Most of these babies die before birth and those who do make it to birth typically live only a few days. However, less than 10% of babies live at least one year. There was much sadness learning that my niece’s baby wasn’t expected to live more than one week.

Delainey Belle was born on November 15, 2010. It was a day of joy and celebration of her birth mixed with fear and sadness that she may not be with us for long. However, she came home from the hospital fourteen days after her birth and her days expanded into weeks and her weeks expanded into months.

This little girl couldn’t speak, but you felt her share her soul when she deeply stared into your eyes and felt her love when she reached her little fingers to your cheek to stroke it. Delainey Belle knew how to communicate and share her love.

Delainey’s parents, grandparents, extended family and friends were so thankful that Delainey Belle was a fighter. Her strength and defiance of dealing with her Trisomy 18 condition helped her beat the odds and statistics that were against her.

She was with us for only twenty-three months and one day as she passed on October 16, 2012. But in that short time she touched an extraordinary amount of lives and continues to bless many of us with the precious memories of our times together.

Delainey Belle has taught us the value of life and what is truly important to happiness. She was given love, devotion and commitment from her family and in return she gave us twenty-three joyful, priceless months of enriching our lives with her beautiful spirit.

If you have a loved one that you have lost, grab your laptop or pen and paper and start Keeping Your Memories of that loved one. It is a helpful therapy while you are grieving.

  • What legacy did he/she leave?
  • What special moments did you share with him/her?

 

 

 

 

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Parents with love, patience, persistence and determination – Trisomy Awareness

2015-03-28

With Trisomy Awareness month wrapping up I want to once again bring awareness to disabilities and honor to three people who I have been blessed with knowing.

My youngest cousin, Ginger, was born in July 1967 with Trisomy 21 which is more commonly known as Down Syndrome.

Aunt Priscilla said, “When Ginger was diagnosed with Down’s, it didn’t seem real.  It took a while to accept it.  We thought we’d wake up and it wouldn’t be so and it was just kind of a dream.  It was hard to realize it was true.”

In order for her to gain weight the doctor instructed the parents to start feeding her baby food as an infant.  With this feeding and converting her to drinking milk from a cup, she started putting on weight.  In addition her siblings played with her continually exercising and stimulating her.

“The doctor was surprised when she saw how well she was doing,” said Aunt Priscilla.  Ginger was nourished with not only food and milk but most importantly with love and touch.

Ginger is happy and content with small things. She continues to bless us all with her good nature and demonstrates to us that simplicity can be a gift.  My memories of her as a baby and now a woman will be with me forever, and I will pass them on to my descendants so they will know about her also.  My widowed aunt is in her 80’s and continues to enjoy her time with Ginger at 47 and loves her dearly.

My friend, Kristina, was born in March 1989 to Elaine and Jerry with Down Syndrome. Kristina had obstacles ahead of her and specialists telling the family that she had a dismal future. Despite what they heard, her parents were not going to let those obstacles stop Kristina.

Elaine was determined that her daughter would walk, talk, and function as best as she could. She might face difficulties, but with perseverance she would go to school, get a job and live a good and happy life.

Kristina underwent physical, occupational, and speech therapy. Her parents were always open to programs and being educated to learn how to work with Kristina to help her to live as independently as possible. With the parents’ love, patience, persistence, and determination their forecast of Kristina’s life has been accurate.

“When we were given the diagnosis that Kristina had Down Syndrome, we were shocked. But she was our baby, and we loved her no matter what. She is our child, and we will love her no matter what the circumstances. I never doubted what our child is capable of doing,” said Elaine.

My grandniece, Delainey Belle was born November 15, 2010 with Trisomy 18 which currently is known to be a terminal genetic chromosomal disorder and occurs in about one in every 3000 live births.

During the pregnancy professionals informed her parents that if Delainey survived the pregnancy and birth, chances were that she would live only a few days. Her parents were given the statistics that less than ten percent of T18 babies live to their first birthday, and if T18 babies do survive, they will be incompatible with life.

Once again, the parents ignored the odds and statistics professionals gave to them and forged ahead for treatment. Delainey was provided intensive physical therapy by a therapist who had a granddaughter with T18 and understood her needs. Delainey passed on October 16, 2012 but she defied the odds and lived to share 23 months and 1 day of precious time and joy with all who met her in her short life. And she might have lived longer if the intensive medical care that she needed had not been denied by medical professionals.

Delainey’s charismatic personality brought smiles to all who met her. She was an angel unable to speak but could gaze into your eyes and communicate her love through them. With the soft touch of her tiny fingers she shared her love as she caressed your cheek. She communicated through her smiles, laughs, grunts and cries!

Keeping Your Memories of those with any disability is important for family members as they will be able to see the essence of their journey.  Love among family and friends is the best foundation of therapy. Grab your laptop or paper and pen and start Keeping Your Memories of the special person in your life and how he or she made an impact on you, your family and those around you.

  • Who in your family has or had a disability?
  • When was it diagnosed and what was the outlook given on the disability?
  • How did your family support this loved one to overcome this disability?
  • Did the loved one defy statistics that were stacked against him or her?
  • From experience what would you advise others to do in seeking additional professional help when denied from others?

www.keepingyourmemories.com