Living with a 9p+

It took me a while to get this out not because I’m embarrassed but because I didn’t want to be placed or place my daughter in the position of scrutiny and answer tons of questions. Nonetheless I came to realize that no matter what people will ask as they have being asking for 12 years every time they see us at the mall or the beach, everyone is curious to know why, how and when… some questions have being senseless and quite painful and many people have pointed and laughed (to me those are the ones who I consider retarded) but I guess is human nature, I’m just too jealous and in a way have been shielding her from everyone and everything as much as I possibly could. She’s my baby, why wouldn’t I?…

Her name is Daniela Cristina and she’s my daughter. She’s 12 years old and was born with a very rare syndrome that affects less than 200000 kids in the US, a condition that is even more rare than Down Syndrome and Autism combined. The syndrome is commonly known as 9p+ (Rethoré syndrome). This syndrome runs in my family, on my mother’s side, which was not known to us until Daniela was born. 3 of our family members were born with derivatives of this syndrome, my daughter (9p+) my nephew (older brother’s son 9p-) and my grand daughter -  I think that’s what she’s to me? – my nieces’ daughter (presumably 9p+ we’ll know when the results come out).

The expectancy of life in kids with this syndrome is not too high. Usually they die within the first 5 years of life, and the complications after birth are heart breaking to say the least. It takes a truly committed and strong parent to overcome all the obstacles but the rewards after the storm are incredible!… Daniela is 12 y/o which makes her an exception to the rule, for which we have been asked many times by genetics and doctors to let them study her, which we have refused to some and agreed to less invasive studies as we wanted to provide her of a normal life that any child has the right to. Because of the syndrome Daniela can’t verbally talk or walk the reason she’s on a wheel chair. She has the mental capabilities of a 2 years old in many activities and of an infant in many others. Nonetheless she completes our lives in ways that I can’t explain.

Daniela is a blast! she’s extremely sweet and has the smile of an angel! she likes to cuddle while watching tv and enjoys music and bright colors, and trust me there are PLENTY of bright colors in my house to stimulate her. Good thing I’m an artist huh?! Although she can’t talk or do any sign language she has told us many times how much she loves us. She’s smart and is able to let anyone know what she wants or doesn’t want even though she can’t talk. She’s the main reason I work so darn hard. Everything I do is for her, to make sure if something happens to me her and her brothers will have everything they need to continue their journeys.

I don’t want to think about the if’s of her condition, I don’t want to think for how long she’s staying with us in this life, these are things that don’t matter to me. What matters to me is that she’s here with us, that she chose us to be our angel on earth, to teach us things that no one could possibly imagine. She has taught us so many beautiful things and has given us soooo much without asking anything in return. She’s my angel and she will always be.

God bless you Dani, God bless you my beautiful angel.

To every parent that has a child with any disability I say don’t ever give up, don’t ever give or THINK to give your child up for adoption. They need you as much as you need them. Only a parent of a special needs child knows this and knows the journey is so well worth it.

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