Dear family and friends,
I want to share a story of my 7 year old niece named Callie who was diagnosed in utero with an arteriovenous malformation in her brain called Vein of Galen (VoG), which is a complex tangle of abnormal blood vessels that connects directly to a main vein of Galen, resulting in increased blood flow back to the heart which in turn increases the workload of the heart. Fortunately, her parents had time to seek out the specialist for this condition in NYC and traveled from VA to New York to deliver under his care when Callie’s mom was 38 weeks pregnant. Callie went into heart failure within 24 hours of birth and spent 7 weeks in the NICU fighting for her her life. They continued to travel back and forth to New York every 6 months for the following 2 years for treatment, hoping for a cure each time. However, they hit a point where they could no longer gain the access they needed to treat due to stenosis of the femoral arteries, which they use for access to close off the AVMs in her brain. Because she was stable they had to wait until she grew bigger, 8 years old or 50 lbs, to resume treatment.
Fast forward to when Callie turned 5, much to our shock, Callie was hospitalized in September of 2017 and diagnosed with yet another serious condition, Idiopathic Arterial Pulmonary Hypertension (PAH), see a video made by CVS here. Her heart was so enlarged that it took up the entire left cavity of her chest. Fortunately, it was caught just in time as Callie was in right heart failure and on the brink of cardiac arrest. . There is no cure for Callie's new extremely rare PAH condition and the prognosis for children at Callie's age is 50% after 5 years. It is a progressive disease that medication only slows down.
On the outside, Callie looks and acts like every other 7 year old. Behind closed doors, her life is anything but typical for a child. Callie’s day-to-day now includes a very aggressive triple-drug therapy , including daily medication multiple times a day and an invasive subcutaneous medication delivered via a medical pump that she has to wear 24-7 that delivers the life sustaining medicine. If disconnected from this medication Callie could go into cardiac failure within 4 hours. Her parents oversees the medical care of the medications and her pump, including having to administer very painful site changes every 6-12 weeks during which time, Callie endures 4-7 days of debilitating pain that some adults have described as being worse than childbirth. Callie has many restrictions related to activity level, temperature , even elevation as any of these at an extreme will put strain on her heart. Because her sub-q site cannot get wet ,this makes normal activities like bathing and swimming impossible without a lot of forethought and prep. She has to wear oxygen to sleep as well as when she goes on a plane. The family now has to travel to Boston every 3 months to see her PAH specialists and every time , Callie has to get blood work and other various tests to make sure her heart is stable. Despite all of this, Callie remains to be a happy and spirited little girl with so much love for life and family. She has overcome so many obstacles and now attends first grade full time. She is an inspiration and a reminder to make every day count.
This December, Callie was scheduled to return to New York to resume treatment for her Vein of Galen. The goal and hope was that this surgery would be a step closer to close over her still uncured Vein of Galen malformation. This is the same procedure she had an infant except this time, there is the added risk that comes with her PAH. It's very dangerous for PAH patients to be under anesthesia for any amount of time. The doctors had to make a very difficult decision weighing the risks and benefits of performing this procedure. It was ultimately decided that the risk of putting Callie under anesthesia for that amount of time and the other potential complications did not outweigh the benefits. This surgery that they have been anticipating for years can no longer happen now because of the complications associated with Pulmonary Hypertension.
We are organizing a 2 day gaming fundraiser for Callie in November during PH awareness month. This event will be sponsored by Fragforce, a gaming charity group that was formed within Salesforce. Callie, her sister Reese and my 2 sons love to play Minecraft and Roblox together so we will plan for a large, kid-centric set of activities on Saturday when we open this to our friends and family. Activities include age-appropriate console games (pre-teen to teen), family board games, virtual reality (VR), Minecraft, and other kids activities. Loaner workstations will be provided on site for computer games.
The money that will be raised will be donated to Team Phenomenal Hope and dedicated to the Phenomenal Impact Fund for Global PH Research.
I hope you will join me in the fight for a cure for Pulmonary Hypertension so that my precious niece, Callie, and all the other children battling this disease can have dreams of the future they deserve.
With hope and gratitude,
Event: Callie's Gaming for a Cure
Date: Saturday, Nov. 9, 2019
Please message and Register with us directly for details if you and your children would like to game to fundraise, or if you can drop by to help support us since space can be limited. Send correspondences to firstname.lastname@example.org
NOTE: There will be food served at noon, and kid-centric set of activities that include age-appropriate console games (pre-teen to teen), family board games, virtual reality (VR), Minecraft, and face painting, and other kids activities. Loaner workstations will be provided on site for computer games.There will also other activities like canvas painting class and silent auctions etc.
( Flyer for the event is in the Photos section up top. You can scroll to the right of the video)