I know it has been quite some time since I have written in my blog... To be honest with you, I tried to reply to someone who had responded to my blog and I could not figure out how to get my response to post. I was very aggrivated and never came back to this site! Well a few moths ago, I had someone contact me via email. She has a little girl that was also diagnosed with 2q37 deletion. We conversed for a while back and forth through email and then we became friends on Facebook. She started her own blog about her daughter and recently started a support group on Facebook! She inspired me again to further my research and I am so happy I did because I found some other Facebook pages with so many babies, children, teens and even some adults with 2q37!!! I can't tell you how excited I am. Here is the story again that talks about my sweet Victoria...
My daughter,
Victoria, was born healthy in April 1996. But we soon began to see signs of
developmental delays as a baby. I, of course, was in denial and just tossed it
up to 'Oh she'll catch up! Every baby develops differently, right?!?'. All of
her infant milestones were delayed. She has always had and still has hypotonia
(low muscle tone). She had strabismus (lazy eye) and umbilical hernia which
were both corrected by surgery at a young age. She started with babies Can't
Wait Early Intervention around 18mos of age where she received physical,
occupational and speech therapies. At the age of 3, she went into the public
school system special education pre-school program and continued with all of
her therapies. She has remained in the special-education program throughout her
school years and is now in her second year of high school. Victoria remains in
the special education program with developmental and learning disablilities.
She will most likely remain there until she is 22. She learns basic life skills
and will only receive a certificate of completion, not a high school diploma.
In 2007, she underwent genetic testing and was diagnosed with 2q37 Deletion Syndrome and with further testing found 3 heart defects and was also diagnosed with scoliosis, both linked to 2q37 Deletion Syndrome. She also suffers from extreme anxiety, debilitated social skills and ADD. Prior to her genetic testing, I always knew that something was wrong with Victoria but never had a diagnosis other than 'developmentally delayed with learning disabilities'. I was always hopeful that she would 'catch up' as she grew older. Victoria is a very bright young lady and easily satisfied... The smallest things excite her, just like a small child. However it is setting in that she will always need me... This does not bother me, because she is my daughter and I would do anything for her. What bothers me is that I do not know whether she will ever get a job, be independent, date, marry, have children, etc... All of the things that we, as mothers, hope and pray for. I am learning to rely on God and trust Him in every aspect of our lives.
In my research about 2q37 Deletion Syndrome, I have spoken with and read about many cases far worse than ours and for that, I am thankful for! I have been brought up to 'Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.' 1 Thessalonians 5:18 I have met a few mothers with small children, but have not ran into any family members with teenagers or adults. I know that I cannot compare Victoria to anyone because each child and their disorder is so different, but it would be nice to just meet or talk with some parents or family members of teenager or adults with this rare disorder. I would be happy to answer any questions, as I have for the four women I have met online as well. We are all on a Facebook page if you would like to join us!
In 2007, she underwent genetic testing and was diagnosed with 2q37 Deletion Syndrome and with further testing found 3 heart defects and was also diagnosed with scoliosis, both linked to 2q37 Deletion Syndrome. She also suffers from extreme anxiety, debilitated social skills and ADD. Prior to her genetic testing, I always knew that something was wrong with Victoria but never had a diagnosis other than 'developmentally delayed with learning disabilities'. I was always hopeful that she would 'catch up' as she grew older. Victoria is a very bright young lady and easily satisfied... The smallest things excite her, just like a small child. However it is setting in that she will always need me... This does not bother me, because she is my daughter and I would do anything for her. What bothers me is that I do not know whether she will ever get a job, be independent, date, marry, have children, etc... All of the things that we, as mothers, hope and pray for. I am learning to rely on God and trust Him in every aspect of our lives.
In my research about 2q37 Deletion Syndrome, I have spoken with and read about many cases far worse than ours and for that, I am thankful for! I have been brought up to 'Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.' 1 Thessalonians 5:18 I have met a few mothers with small children, but have not ran into any family members with teenagers or adults. I know that I cannot compare Victoria to anyone because each child and their disorder is so different, but it would be nice to just meet or talk with some parents or family members of teenager or adults with this rare disorder. I would be happy to answer any questions, as I have for the four women I have met online as well. We are all on a Facebook page if you would like to join us!
There are many other good Facebook pages where I have since come in contact with teens and adults... Great support groups to go to for questions and answers! Feel free to email me with any questions williamsrd08@yahoo.com.
No comments:
Post a Comment