Please read this...

I just so happen to be a procrastinator of massive proportions. If there were an award for procrastinators, which there should be, maybe mine is late, I would probably be one of the winners. With that said, I was supposed to mail out these fundraiser letters for the 9pminus support group, and didn't. So, I'm sending a virtual mailer right here, on my blog. Obviously, I don't count on raising $100,000 like Kelle Hampton did in honor of her daughter who has Down Syndrome (I'm sure the National Down Syndrome Society loves her), but, I'd like to give you a little information and invite you to give if you feel compelled to give.

What is 9pminus? It is a deletion on the short arm of the ninth chromosome.

How does it happen? Most cases occur de novo, or by chance, up to half occur due to a balanced chromosomal rearrangement in one parent--the child in these cases has inherited an unbalanced translocation. Walter and I have not been tested so we do not know if Isaac's deletion is inherited or, by chance.

Typical Characteristics of a 9pminus child: mild to severe mental retardation, developmental delay, hypotonia, trigonocephaly, small midface, small mouth, high or cleft palate, small ear canals, narrow ears, upslanted eyes, narrow hands and feet, congenital heart defects, renal malformations, hypospadias in boys, inguinal or umbilical hernias, GI reflux, constipation, scoliosis, feeding problems, speech problems, seizures, low muscle tone, sensory integration issues.

As quoted from Isaac's genetic report:

Children with 9pminus tend to have delayed onset of speech and independent walking, although they generally do attain these skills. Once established, speech tends to be fluent although narratives may focus on minor details and emotional states rather than provide a concise summary of the situation (Chilosi, Am J Med Genet (2001))" Strong social skills and easy interactions with others, including strangers, are common. Children are developmentally delayed and have mild to moderate mental retardation (IQ range: 33-76).

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If you've been following my blog for a while, you know that we've faced many challenges with Isaac and it took over a year for us to get his genetic diagnosis and after that, all of the puzzle pieces seemed to fall into place. Isaac has taught our family so much over the past two years. We've been thrust into the world of special needs, which was never a place I imagined finding myself, but we are grateful for what we've learned and the amazing people we've had the opportunity to meet along the way. The downside of Isaac's syndrome is not all of that medical stuff I shared with you, but the fact that 9pminus is extremely rare. Less than a year ago, Isaac's geneticist told us that less than 300 people in the world have been identified as having a deletion on their ninth chromosome.

Hence, the need for this fundraiser. The Chromosome 9p- Network strives to share new information with families and also connect families in order for them to offer support with one another. We have some idea of what the future will hold for Isaac, but on the other hand, there is so little research, that many questions are left unanswered. The 9p- Network is a non-profit organization and made up of parents who work really hard to reach out to other 9pminus families. Any amount of money you are able to donate will allow funding for the annual Yearbook that is printed for each family and also the planning and preparation for the Triennial Regional Conference (which we look forward to attending!).

As printed on the invitation I was supposed to send in the mail:

You are cordially invited to

The 9p- Springtime Tea

In honor of 

Isaac K.

Our tea is given you see, 

To support our 9p- families.

Your funds will allow our programs to blossom, 

so we can help our children, who are awesome!

It's the most delightful benefit you will ever attend, 

And it's just support and love that you will send.

On Sunday, the 13th of May

We'll have a tea, so save the date.

No cookies to bake or silver to lend, 

No linens to launder or beg from a friend. 

You don't have to worry about what to wear, 

And no car fare or parking to give you a care. 

So here is a tea bag, don't put it away.

(pretend you have a tea bag, okay?)

Mark your calendar and remember that day. 

Sit down and relax, sip the tea at your pleasure, 

Your generous gift will always be treasured. 

Place: Home Sweet Home

Date: Sunday, May 13, 2012

Time: At your convenience

RSVP: Give with your heart

9p- Springtime Tea Donation

Donor Name: 

Address: 

In honor of:

Donation amount:

Please make all checks payable to Chromosome 9p- Network

*Donations from outside the U.S. should be made in U.S. currency or through PayPal at www.9pminus.org

All donations are tax-deductible. 

THANK YOU!!!

Mail Donations to: Chromosome 9p- Network P.O. Box 524 Appleton, WI 54912

And just from our family, thank you for reading our story and supporting our family! 

Sierra, Walter, Isabella, Isaac, and Stella