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2019 HAE IN MOTION 5K - Wheaton, IL
Hello family and friends!
We are starting to get our walking shoes out and get in shape for our 4TH WALK FOR HAE. Our date is Saturday, June 15, 2019. Yes, we have moved the date up from August to June. The weather last August was a tad warm, so we are hoping for milder weather in June – fingers crossed!
We will be walking in Danada Woods in Wheaton as we have in previous years.
In 2018 we were overjoyed to raise $3,940!!! That was over $1,000 more than our 2017 Walk. Our supporters are the best. If you supported us financially or emotionally we are grateful.
We truly are A SWELL BUNCH! We are what three generations of HAE looks like. If there was another generation before us we have no knowledge.
Our BUNCH is made up of adults and children whose lives are impacted by swelling episodes. Collectively we’ve experienced swelling episodes in the face, hands, arms, feet, airway and abdomen. Over the years, there have been numerous emergency room visits, filled with unnecessary tests and doctors with little to no experience with treating HAE. Those days are behind us. We have an AMAZING Dr and a network of people to help us on our journey. Great medical strides have been made. There are now FDA approved treatment options for every member of our family. We are grateful for this but we are still optimistic in finding a cure.
Our situations have changed a bit since last year, and that’s good. Sue – I have my medication, which is an injectable drug. When I have a swell, which is rare. My swells have been limited to my abdomen, Jim gives me a shot and within a short time I am feeing good. Brian is on a twice weekly injectable PREVENTATIVE medication. He has been on this medication for over a year and has not had a swell. Ayden fortunately has had only two swells and was able to work through them with treatment. There is an IV administered drug if he needs it in the future. Our Emma started on the PREVENTATIVE medication that Brian is on. Brian gives her the twice weekly shots. She began this drug in November 2018 and HASN’T HAD A SWELL, OF ANY KIND SINCE. This is fabulous! Prior to this drug Emma had been in the Emergency Room too many times. I think in 2017 the total was between 25-30 - In 2018 ???. Caleb who is 4 was diagnosed over a year ago. It took repetitive (4) testing to determine his diagnosis. It is a difficult disease to diagnose. We are ecstatic that Jessica does not have HAE and therefore cannot pass in on to her boys. She, Vic, Gavin and Truman are important people on our team as they have been witness to the pain and struggle we all go through and have been there to help whenever they could.
We look forward to June 15th and hopefully we will reach or even surpass our goal of $5,000. Our lives have been drastically affected this disease but the advancements made in the treatment in the last several years encourages us. We are still optimistic for a cure.
Donations may be made to our team page “A SWELL BUNCH” on the HAEA in Motion 5K web site. If you wish to walk with us you need not register, unless you want to receive a “BIB” and have your time recorded.
Once again, if you receive this information via multiple “social media” we apologize. We are anxious to spread the word.
Love from A SWELL BUNCH,
Brian, Tricia, Ayden, Emma, Caleb
Vic, Jessica, Gavin, Truman
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