Ezra’s Story… The Importance of Infant Screening


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When you first find out your expecting a little one it seems like your mind completely shifts from “me” to “baby” and you want to do everything in your power to keep them perfect.  You want this baby to have the best chance in life, you’ll start working out, eating better and of course not drinking (or smoking) for the next 9 months!  Even after that you want them to have everything they’ll need so you buy all of the gadgets and outfits you can!

There’s one more thing you can do to hopefully ensure your baby’s health and it’s INFANT SCREENING.  When we had Ranger, a sweet friend of ours told us about extra infant screening that could potentially diagnose certain diseases our child could be born with, but if caught early enough could be treated! So we did!  Our friend had experienced the loss of a child, who if they had been able to diagnose his disease earlier he could have possibly been saved. With his advise we took the Supplemental Infant Screening (Step One) HERE and ordered this $100 test from Hunter’s Hope website. WORTH EVERY PENNY! The peace of mind knowing either way is priceless.

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I’m coming to you expectant parents with information that I hope you will take to heart and act on. I pray every test comes back negative, but maybe if it doesn’t, it’s something you can treat and save a life!

This sweet mom Karlita reached out to me with her story about their son Eza that I wanted to share.  As a mom who is so thankful for infant screening because it gave her son life, she has a heart for passing it on to others in hopes that she can help some other parents spare some heart wrenching circumstances with their child!

Meet Ezra!  This sweet little boy is a fighter and beating the odds everyday.  His mom has shared her story about their journey with Ezra and why she wants every family to know how important Infant Screening is and how it has saved her son’s life.

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“Ezra was born on October 8th, 2016. He was 6 pounds, 14 ounces of perfection in every way. The pregnancy was uncomplicated, his birth was quick (especially for a first baby!) and we headed home hospital from the with our healthy baby boy to start life as a family of three. However, on October 26th, when Ezra was just 14 days old, our lives changed forever.

As a result of newborn screening, we were informed that our son had a very rare genetic disorder called Krabbe Disease, a type of leukodystrophy that results in progressive damage to the nervous system. When left untreated and once symptoms have started to outwardly show, it is typically fatal by the age of two. At the time, Missouri was only 1 of 3 states (there are now 7) that were actively screening for this disease, meaning that the majority of children diagnosed are unable to receive treatment and parents are forced to make their children comfortable until the disease takes over.

Upon receiving the devastating news that night, we researched what we could (there was very little) and found the Hunter’s Hope Foundation (www.huntershope.com), which put us in touch with a specialist at Duke University who founded treatment for the disease and who was willing to perform a transplant on Ezra. Without any hesitation, we left our friends, family, home and dogs and headed to North Carolina where we knew our son would receive the best care possible. Ezra underwent nine days of chemotherapy before transplant to completely wipe out his immune system in preparation for his stem cell transplant. As you can imagine, the side effects of chemotherapy on a one month old are heart wrenching to watch as parents. We remained in North Carolina for five months, while he underwent follow up care and they monitored his progress. Ezra excelled, got stronger and started hitting milestones (although delayed). On March 30th, 2017 we were able to travel back home to Missouri and transfer his follow-up care here. Without newborn screening, our feisty little boy may not be with us today. Today, he is a healthy and happy 16 month old. He loves to climb on anything and everything, chase the dogs around and wave at the cars going by. He continues to build his strength due to the extensive hospital stay by participating in physical and occupational therapy. There is not a day that goes by that we are not amazed by his strength, resilience and gentle nature.

The Blackwell Family (Ryan, Karlita and Ezra)”

Karlita has some amazing information about their journey on her blog that I’ve linked below:

Also, this link to their story in the news may have you in tears (like me), but will hopefully give you some info you might need!

KFVS12 News & Weather Cape Girardeau, Carbondale, Poplar Bluff

 

Please feel free to ask any questions you may have.  I know that there is so much information you have to take in when you’re expecting, but please let this be one of the most important priorities on your list. For all of the info on Infant Screening and more on  Krabbe Disease please to to Hunter’s Hope HERE.

xo,

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