Hope

Hi, my name is Melinda.  I am a mother to a special needs daughter suffering with an extremely rare chromosome duplication/triplication.  Most of my daughter's problems are caused by the Mecp2 duplication.  She has even more copies than needed and it has thrown her whole body out of wack.  My daughter suffers from Epilepsy, Cortical Visual Impairment, Hydrocyphelus, Hypotonia, Severely delayed in development.  She cannot walk, she cannot talk, she cannot sit up, crawl, or even roll over.  She is fed through a g tube, and cannot eat orally.  She requires C pap at night.  She has had major respiratory problems the last few months.  Requiring to be on Bi pap, and be admitted in the PICU.  When she was 2 months old vaccinations triggered Epilepsy to begin.  I guess it is common to have happen when you have an underlying condition.  The seizures turned into infantile spasms, they can cause major setbacks.  http://www.epilepsy.com/epilepsy/epilepsy_infantilespasms   If you read the article on infantile spasms it's not such a good prognosis is it?   Because of the infantile spasms Lucy has Cortical Visual Impairment. http://en.wikipedia.org/wiki/Cortical_visual_impairment.  She is legally blind.

At 5 months old my daughter developed hydrocyphelus. http://en.wikipedia.org/wiki/Hydrocephalus.  Thank heavens we discovered it early on before damage was done.  Because of Lucy's condition she also has severe hypotonia.http://en.wikipedia.org/wiki/Hypotonia.   This has caused a major problem in her mobility.  Why am I listing all of this off?  Because I want to paint a real picture to people.  My daughter has had all the odds against her.  My OB didn't even think she would make it to birth.  She was only 3lbs 9.5 oz at full term.  I was told at 25 weeks that she was growing behind, and it could be the end of the pregnancy.  I have gone through absolute hell.  I've seen babies in the NICU and PICU struggling to live and some not make it.  I know God sent my daughter here for a reason, and she is the sweetest little girl.  She doesn't complain when she goes through so much!  She teaches me and my family what it's like to have an angel in our presence.  She is my angel who has fought her heart out, I will do everything I can to give her a better life.  Because there is HOPE!  Scientists are super close to getting a medicine to help regulate the mecp2.  This could be a huge break through.  This would help Mecp2 duplication/Rett syndrome.  Rett syndrome goes along with Mecp2 duplication.  In fact a mouse model was done already with Rett syndrome and it was successful.  http://www.rsrt.org/research/understanding-the-2007-reversal/  Check out the video on the link.

Above is a video that has some of the children experiencing the pain the mecp2 duplication brings.  We are in the process of making a new video that will have even more children, along with Lucy in it.

We are looking to get funding for a pharma screen to reverse this!  We are less than 40,000 away to start the first 2 years.  The Big Give in the UK will match donations on December 5th.  I am taking all the donations from my page and donating it to it.  I want as much as we can to get doubled.  Please help Lucy and all the other children suffering.  Wouldn't you do something too if this was your child?  I'm begging and I'm pleading for help.  If you want to learn more about the 401 project reversal here is the link. http://www.401project.com/

Please donate, please share.

At the top of the home page I have a donate button, you can donate from there.  It goes into the paypal account for her.  You can also go to paypal and donate to messproductions@gmail.com.  Please use these options, I want to make sure I can get this money doubled and will place it in the right fund for the project. 100 percent of the money goes to helping our children.  December 31st we have a deadline to raise the funding for the first 2 years.  Please please help!