ROHHAD. Have you ever heard of this disease? I had never, in my life, heard of ROHHAD, until this past weekend. On Sunday, I picked up the local newspaper, here on Long Island, called Newsday. I saw this beautiful face looking back at me. The little girl in the picture I was about to read about, was Marisa. And her story made me want to hurt someone, because this beautiful girl, suffers from ROHHAD. Hurting someone wasn’t going to help her, so I thought to myself, “do something about this”. So, early Monday morning, I contacted the ROHHAD Fight Inc. organization and asked them if I could help. And here I am-raising awareness and MONEY for an amazing young lady.
First, let me tell you what ROHHAD is an acronym for. It’s called, get ready for it, Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and automonic dysregulation. I had to read that three times and I still had no idea what it all meant. I’m figuring you guys don’t know either, so I’m going to share what ROHHAD is with you right now but I’ll be breaking it down for you, like they do on their website.
- Rapid-onset obesity: Large weight gain in a short amount of time (15-20 lbs. in 6-12 month period with onset between 1.5 and 10 years of age).
- Hypothalamic Dysfunction: When the hypothalamus doesn’t function the right way. A child can suffer from some, or all of the following symptoms: increased weight gain; hypothyroidism (causes fatigue, weight gain, hair and skin changes, cold intolerance); growth hormone insufficiency; diabetes insipidus or inappropriate anti-diuretic hormone; excessive or diminished thirst due to water/salt imbalance.
- Hypoventilation: Breathing that’s not adequate to meet the needs of the body, or reduced lung function.
- Autonomic Dysregulation: Impairment of the autonomic nervous system, which may include some or all of the following symptoms: Altered sweating; decreased body temperature; decreased sensitivity to pain; cold extremities (hands and feet); bradycardia (decrease in heart rate); chronic diarrhea or constipation.
Here’s the scary part……since it it’s so rare, only 75 cases are known, so there’s hardly any research being done. There’s also no NO CURE and NO TREATMENT. All they can do for Marisa is have her on a ventilator FOREVER. All day, all night, every day, all day. Do you understand what that means? I hope so. Because I’m not going to dare write down any kind of negative thoughts in this blog post, only “positive” ones.
So, how do we help? We raise awareness and we give what we can for those suffering with this disorder.
How am I helping?
I’m raising money. That’s right! For those that know me, I’m a big fund raiser for causes that I believe in with all of my heart and Marisa’s story touched me. Marisa’s an amazing little girl, with a fantastic set of parents and a community that loves and supports all of them. But they need help spreading the word about ROHHAD and raising money to support research, along with money to help those afflicted with this disorder, live more comfortably while research is done to help FIND A CURE for ROHHAD! They have a fantastic Non-Profit Organization called ROHHAD Fight Inc.
If you read my blog, you know I started an Arbonne business in February.
Well, for a little over TWO WEEKS (June 22nd until July 9th), I’m DONATING 25% of my commissions on ALL sales during this time period. I earn commission on the retail value of the products sold, not on the sales tax or shipping. So what I’ll donate is 25% of the commissions (not including tax and shipping). Doesn’t matter if you order something for $8, or you go whole hog and decide to order something for $300. Giving is giving, raising money is raising money – everyone wins, no matter what you’re able to give, it’s more than they had before this fund raiser started! Buy what you can and TALK ABOUT THIS fund raiser, share it and share your knowledge of ROHHAD.
Arbonne’s products are pure, safe and beneficial. Nothing harmful and all botanically based. High end products that are so concentrated, they last longer than the products you purchases anywhere else. The products can be ordered through my website: ARBONNE
Please, share this fund raiser with as many people as you can. I am dedicated to raising a BOATLOAD of money for ROHHAD Fight Inc. and Marisa!
Help me to help this amazing Long Island Princess and her family, her fellow ROHHAD community and the ROHHAD Fight Inc. non profit organization!
Order now and help raise money for ROHHAD: RAISING MONEY FOR ROHHAD
Each person who makes a purchase during the two weeks of the fund raiser will be entered to win raffle prizes!!!!
Two extremely generous fellow moms from LONG ISLAND have donated gift certificates for this online event.
We have the following raffle prizes donated:
Dara Warshaw is donating ONE Gift Certificate for a ONE HOUR MASSAGE ($65 Value) at Touch of Health Massage in West Islip.
Visit her website at:
Jennifer Posanti is donating ONE Gift Certificate for Cookie Lee Fine Fashion Jewelry! It’s a $45 Gift Certificate. Amazingly generous!
Visit Jennifer’s website at:
I have taken this information from their website:
This is Marisa: Beautiful girl. The weight gain is just a tiny part of the big picture for Marisa. She doesn’t feel pain like the rest of us do, so if she is seriously hurt, she may not even know it. Every day, she has to use a ventilator ALL DAY and ALL NIGHT. It’s not just hard for Marisa, but can you imagine what it’s like for a Mother not to be able to hear her baby girl’s voice? Speaking through a ventilator isn’t the same, her Mother doesn’t hear her baby girl’s voice, she hears a warped version of her daughter’s voice. And her father has to prick her fingers every day to check her cholesterol levels, among other things. No father should have to do this to his little girl.
Let’s raise money and find her a cure! Let’s raise money to find ways to improve the lives of those stricken with ROHHAD, as well as their families!
Help me help Marisa – PLEASE place an order today and share this fund raiser with others.
**IF you are in the UK, Canada, or Australia, you will have to go through the main www.arbonne.com website to place your order. You will then have to use my ID# 19082960 when you complete your purchase. It will need to be entered into the field called: Referral Arbonne Consultant ID. It should link you to me, Staci Gerardi from Ronkonkoma. Thanks!**