A YEAR IN REVIEW
A year old? Did that really just happen? Only ONE overnight in the hospital after our initial stay? Are you kidding me? Speaking of our initial stay, they told us 2-6 months and we checked out the day she turned two months old! Is this for real? ZERO fevers, ZERO line infections, ZERO liver damage (seemingly). In fact, the girl has literally never been “sick.” Apart from some pretty frequent colicky episodes for a few months, I have never even seen her look sickly or in distress. (ANGRY at everyone messing with her….yes!). Her only real complications over the last year were two central line breaks, both that were uber scary but turned out okay, and a few months lull in her growth which has since picked up. It still boggles my mind to think back almost exactly a year ago when the MFM and NICU doctors told us to contact palliative care, that she won’t eat, and that she probably won’t live
to see her first birthday, to the bouncing, smiling, crawling, standing, bundle of joy, who not only nursed, took a bottle, and eats baby food, but who also enjoys ice cream and who is currently climbing on me, blabbering at me, and pulling my hair.
Anabelle will turn one September 14. Practically EVERYTHING about MMIH research, prognosis, education, and advocacy has changed and grown by leaps and bounds over the last year of her life. Before Belle was born, we were faced with limited research, no reliable information sources, and no way of funding research for a better future for MMIHS patients. That all began to change in October of last year, only a month after Belle was born when MMIHS.org was created which provides updated information, recommended doctors, care tips and tricks, and shares real stories of real families dealing with this chronic disease. I first blogged about the creation of the website here. Soon after that, the MMIHS Foundation (pending (501(c)(3) nonprofit status) was formed. The mission of the foundation is as follows:
The MMIHS Foundation is a volunteer organization dedicated to bettering the lives of those affected by MMIHS through the cultivation of a supportive and resourceful community which promotes advocacy, awareness, education, and research.
To sum up, this past year, our MMIH community has grown by leaps and bounds and most importantly with HOPE! Prior to MMIHS.org and the creation of the Foundation, a very popular prognosis facing families was, “Megacystis microcolon intestinal hypoperistalsis syndrome (MMIHS) is usually fatal in the first year of life, with an average life span of 3.6 months” (https://rarediseases.info.nih.gov/). We know this is outdated information and does not reflect more recent medical advancements, especially with TPN.
As you can probably imagine, Belle turning one this fall is an amazing reason to celebrate not only her life, but the progress we have made in just the last year toward a better future for children facing MMIHS. Anabelle will be the FIRST known MMIH baby to celebrate her FIRST birthday since the creation of the website and foundation. As we contemplated how to celebrate this milestone, we decided to donate her birthday as the first fundraiser for the MMIHS foundation. That’s where you come in! On October 21, we will be holding Belle’s ‘Beat the Odds’ Birthday Bash” with all proceeds benefiting the MMIHS Foundation. Truly, this could change the lives of Anabelle as well as many other MMIHS families!
We are inviting YOU (as in whoever is reading this) to come celebrate Belle’s life and the progress that has been made with her rare disease at her Birthday Bash on Oct. 21st at Grace Hall (215 Arthur St. Kittanning, PA 16201) from 1pm-4pm. This event will double as her birthday party as well as a fundraiser for the MMIHS Foundation with all proceeds going directly to the foundation. Our amazing planning committee has been busy since the beginning of the summer planning this event. We will have complimentary food and dessert and lots of complimentary activities for kids and families including a caricature artist, balloon artist, face painting, a bedazzled photo booth, TEN DISNEY princesses who are happy to take pictures with your kids, and various other fun, FREE activities for children and families. For the adults, there will be a silent auction with many different baskets to bid on. You will also get the opportunity to “meet” other children battling MMIHS by reading their stories and know that your donation will help impact many children, not just Anabelle.
VERY IMPORTANT: We are donating Belle’s birthday to the foundation with hopes of raising money that some very brilliant doctor will someday use to find the cure for her disease (I’m not even kidding). Therefore, we respectfully ask that you do not bring Belle a birthday gift. The premise of donating a birthday is that guests come to her birthday party and make a donation to the cause in lieu of buying her a present. As much as I’m sure you would choose the sweetest gift for Belle, what she really needs, more than anything, is improved treatment, and better yet, a CURE for MMIHS. Please resist the temptation to bring a gift with you and instead put the money you would spend on a present towards the MMIHS Foundation. Please note that there is no cost to attend the event and that all activities and food are complimentary. Baskets will be auctioned (silent auction style) and a gift box will be available for monetary donations.(Please note that all food and kids’ crafts are available on a first come, first serve basis, until we run out. Since we can not possibly know exactly how many people will attend, we appreciate your understanding on this matter!)
Lastly, I want to emphasize that this is truly a historical event you have the opportunity to be part of. I don’t mean Belle’s birthday, but the first fundraiser for a newly formed foundation. MMIH is considered a RARE disease, and unfortunately most rare diseases have much less research or funding than more common diseases. The American Heart Association is an AMAZING organization for example. According to the AHA website, it has existed since 1924 and has invested over 4 billion dollars for research to improve cardiovascular health and reduce the rate of death from heart disease and stroke (heart.org/HEARTORG/). How amazing is that? When I looked up information from The American Cancer Society, I was even more blown away. According to their website, they have invested 4.6 billion in research since 1946. They have provided free treatment for 6.3 million patients, and averted 2.1 million deaths since 1991 (cancer.org). That is just incredible! Praise God for those organizations and the help they have given so many people. Can you even imagine what the pioneers who started those organizations must be feeling knowing the legacy they left? When Belle was born, an organization such as these did not exist for MMIHS, but by the Grace of God, now it does! The only research that has been done for this rare disease is basically identifying it in the 70’s and more recently, isolating the gene that causes it. This is a group that previously had no voice now being empowered to speak and to be heard. And this is the FIRST fundraising event they have ever had!!! Praise Jesus! How amazing would it be to read about the MMIHS Foundation 50 years from now helping to save thousands of MMIH patients and to know that you had a part in the FIRST EVER FUNDRAISER for the foundation?
We need your help to make this fundraiser successful for the Foundation. There are many ways you can help. First of all, you can come to Belle’s party to celebrate with us. Please RSVP to our Facebook event page here. Secondly, if you would like to donate a basket or a gift certificate (or you know a business that would like to), please contact
Jen Sperl on the Facebook Event Page OR by emailing her at firstname.lastname@example.org. Thirdly, if you can not attend the event but would still like to make a donation, we will have a way to do so in the very near future via the MMIHS.org website. Lastly, keep your eye on the Facebook page where we will have a list of items needed to be donated for the event.
*For this particular event, we are asking that no lottery or alcohol baskets be donated.
Please come celebrate Anabelle’s life with us. Please come help us raise funds for MMIHS specific research, advocacy, and education that she and her fellow fighters may have many, many more years ahead.
Thank you from the bottom of our hearts! We are over the moon excited to host you to celebrate Anabelle’s first amazing year!
All our love,