An urgent matter has come to my attention and I realized that collectively we have the power to help a little girl who desperately need us. This is a true heartbreaker, so please read.
A few months ago my friend Blair Porter (of Midas-Financial.com) introduced me to a lovely family via their blog. The 5 year old daughter, Hailey, has a rare condition that is threatening her life. After several years of repeated episodes, hospital stays, and attempts to cure or ease the problem, little Hailey has reached nearly the end of what the medical world is able to do for her comfort. It comes down now to one clinical trial that may have the power to bring her some comfort and normalcy - and of course insurance will NOT cover the medicine this poor baby needs. On their own, Blair and her fiancee Darrell have helped the family raise a large portion of the funds that are needed, unfortunately they are still about $1400 short.
Here is a link to the page on the blog that will tell you some of the history:
I suggest starting here and then visiting the 'home' page to read the most recent updates.
Here is the info on what they are trying to accomplish now:
-Hailey's "diagnosis" is episodic encephalopathy of unknown origin.
-If they are able to pay for the trial, Hailey would be admitted and started on the medication and would be monitored to make sure she doesn't have a reaction. After that she will be sent home and the rest will be outpatient.
-All of the appointments are in Denver. She will be monitored by her regular neurologist at PSL, her pediatrician in Stapleton then the trial team at university.
-The insurance will cover any medical care which will be any admissions or doctor appts. The cost is only for the medication.
-they will not take payments. Their reasoning is that you can not complete just part of the trial and if they take payments then people are likely to drop out if they can't afford followup appts.
-it's called flunarizine.
This is especially heart wrenching, and from what I can tell the family has already lost one child -as a mother I cannot bear the thought that they may lose another to something that may potentially be solved or eased by this treatment - or that they could come so close to help and not be able to get over the hump so to speak.
I AM CALLING ON YOU to help me find the people who are able to help Hailey. 303Network will donate profits from the sale of any showcase tables at FogoDeChao next week to Hailey's family, and I would like very much if I could count on you to help me spread the word about Hailey's plight to all four corners of the universe so to speak, and if you pray, pray passionately that not only to do the funds appear for Hailey, but that the treatment will be effective, and that what they learn from this trial will save other children from this heartbreaking condition.
Thank you for reading and helping!
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