Part 18~Updates

Hello everyone~ so sorry for the delay in the posts. We were very busy the past few weeks with our Awareness Rocks event on Sept. 21st. We feel it was a smashing success! We had several hundred people attend the event, had over 100 silent auction prizes, a raffle and wonderful entertainment by JD Unplugged and the fabulous GB Leighton! A fun time was had by all! Thank you to everyone that was involved with this event, from the Volunteers to the donors, our Swim Above Water team members and O'Gara's Bar and Grill in St. Paul. We cannot adequately express our gratitude. Our hearts are so warm with all the love shared.

Although I want to continue to share our journey of losing Hailee, and what the grieving process was like, I want to take an opportunity on this post to provide some updates of value to the Awareness effort.

We are learning more and more about Naegleria Fowleri every day. It is still very much in the news. I have added a few links of recent news stories for you to view, just check out the bottom right side of the blog page and click on the links.

A timeline of the 2013 season of Amoeba is as follows:

July 2013 Kali Hardig of Arkansas becomes ill and was admitted to Arkansas Children's Hospital and diagnosed with PAM. Doctors act very quickly (as they have seen this infection before) and reach out to the CDC for assistance. Kali became the first patient to be treated with a new experimental chemotherapeutic drug from Germany called Miltefosine. Doctors also tried a new treatment of cooling her body and brain temperature down to perhaps slow the progression of the infection and give time for the brain to heal and prevent catastrophic swelling. After 55 days in the hospital, 22 of them in ICU, Kali was discharged from ACH to her parents. She continues to undergo therapy after being so very ill and in a coma for such a length of time. She has become the 3rd survivor of PAM. The only one in the last 50 years! She is our living miracle and we are so encouraged by her recovery from this! Swim Above Water is a part of The National Advocates for Amoeba Awareness, and on a recent conference call with the CDC heard that they too are encouraged by her recovery, however there are many unanswered questions and much research still needing to be done. They will inform us as research is complete and more answers are available. Shortly after Kali's diagnosis, the family of Davian Briggs stepped forward to say that Davian had died 2 years ago after swimming in the same freshwater water park that Kali had, and he had also been treated at Arkansas Children's Hospital.

Just a few weeks after Kali became ill, another little boy-- Zachary Reyna, age 12, from Florida became ill and was admitted to Miami Children's Hospital. He was diagnosed with PAM. The experimental medication was sent to Miami Children's for Zachary, and doctors from Miami contact doctors from Arkansas to try and duplicate the treatment plan that had at that time seemed to have saved Kali. Sadly, the treatments used for Zachary did not work. Zachary passed away on August 26th after a strong and valiant fight. We have followed Zachary's story and are in touch with his family, as well as Kali's family. There is obviously much work to do, because the efforts did not work for Zachary. Zachary contracted PAM while mudding and being pulled behind a 4-wheeler in ditch water near his home.

In the time since Zachary's death, we have learned of another little boy from St. Bernard Parish in Louisiana named Drake Smith Jr. He was just 4 years old and had been visiting with family in the Parish when he fell ill. He had been playing on the slip and slide in the yard of the family home. He was found to have had PAM as well, but died from the illness. After, research was done on his exposure to freshwater and the slip and slide was the only exposure. Testing was done on the home and NF was found in the water system in the home. Further testing showed that the public water supply in St. Bernard Parish was colonized with NF in several test sites. The city put out warnings, and treated the system. At this point, we have not seen reports confirming that repeat testing has cleared the colonized NF from the public water system in St. Bernard Parish.

The CDC did confirm and the family has also asked for prayers for their son, Able. The family has asked for privacy so we don't have very much information other than he has been confirmed to have PAM, and he is from Texas and he is 8 years old. The amoeba appears to be cleared from his system after receiving the experimental drug however significant damage had been done. Latest reports stated that he needed a lot of therapy and family continued to ask for prayers.

Two years ago, two adults from DeSoto parish had died from PAM after contracting it by using tap water in a net-pot sinus rinse device. After the confirmation of Drake Smith Jr. in St. Bernard Parish, the DeSoto Parish did some testing of their public water system and did confirm that they found NF in several testing sites throughout the system. They put out public warnings and precautions and also stated there have been no PAM cases in 2013 from DeSoto Parish.

As you can see from reading above, our message is becoming broader. It is just not from shallow, hot lakes and ponds. This amoeba has proven to infect in many types of water sources. Small and large lakes/ ponds, rivers, hot springs, tap water, ditch water.

The current message that we have for you, that is supported by the CDC, is that you should refrain from getting freshwater up your nose at all. There are links on our and website to the CDC where you can find recommendations for your tap water or recommendations for private well owners. We are so concerned about this amoeba being able to colonize (take up residence) in a public water system. It can be very difficult to destroy the amoeba once they colonize. Many times public water systems get their water source from freshwater sources. In the case of St. Bernard Parish, they get their water from the Mississippi River. Flooding in the area from hurricanes might also be a potential complication. Research continues on this as well.

There will be much more to come. Our only goal is to help you to be safe and educated on the risk. We do not mean to scare anyone, as infection from this amoeba is not common. However, the amoeba itself is very commonly found in freshwater sources and is showing up in unexpected places. It is hard to tell where it will go from here and how virulent it will or can become. Prevention is the best thing to do right now.

Thank you for reading, more to come...

Heidi