Thursday, December 20, 2018

SIOD at a Glimpse

Every 21 days an IV start and labs for her IVIG treatment! 😐She adjusts to this routine, and some IV starts go better than others, but it still is a challenge every time because who enjoys getting poked and prodded all the time year after year?! πŸ’‰
Emily has a rare genetic life limiting dwarfism disease called Schimke Immuno- osseous Dysplasia (SIOD) and these treatments are one of many things that help keep her with us. Those suffering from immunodeficiency diseases (low T cell function)-as with #SIOD - having poor IgG levels can benefit from IVIg - a blood product derived from blood donors. Her infusions last 3 hours generally and are monitored by a home health nurse as any type of blood transfusion can cause the body to react.😷 We appreciate our friends of which some have been with us nearly 10 years who help to make each time as smooth as possible. 

Tuesday, December 18, 2018

Little Giants TV segment

Emily and I enjoyed being guests on metroTV! Here is the air schedule for the show that includes our appearance locally:

KPAO - Cox 22 / CenturyLink 89
   - Wednesday December 19: 8 PM
   - Thursday December 20: 4 PM
   - Saturday December 22: 2 PM

Below is the YouTube link for our segment. The first airing took place Tuesday, December 18th in the morning, so please feel free to share at will:

Sunday, December 16, 2018

Merry Christmas one and all!

πŸŽ„As has become tradition for our family we are sharing our Christmas card via social media this year and have donated what would have been spent in honor of Believe in Emily Koesters  to our Little Giants Foundation❤. We hope you will consider a donation as well to help raise funding for the research for Emily's disease #SIOD and others afflicted now and in the future. Go to DONATE NOW on the right side of this page and Click the Link .
πŸ€—And our affiliate Midlands Community Foundation is matching donations up to $5,000 for each new donor now thru Jan 7, 2019! That's giving!πŸŽ… Don't forget to please view & share the YouTube video "Believing in Emily"as well! #believeinemily #believeinlittlegiants #SIOD #1OF5INUSA #raregeneticdisease

Tuesday, December 4, 2018

Thank You for Believing in Emily!

 We are so fortunate to be recognized in the Packard Children's News that is put out by Standford Lucile Packard Foundation for Children's Health.
It is because of you that we were able to send such a sizable amount for #SIOD #RESEARCHFUNDING!