Hello friends of Blakely Strong!

Thank you all for being so sweet and sending your prayers and good vibes to Blakely Mae. Her family and close friends are so grateful for our amazing community that reaches out to check on her so often. It’s hard to Believe Blakely will be 2 in just 3 weeks! Blakely recently became a big sister this winter and she is loving every minute of it. She is doing Occupational and physical therapy once a week and will soon start speech therapy! She loves dancing with daddy, snuggles with mama, playing with her sissy, and eating ice cream! With that being said most of you know that Blakely is not your average 2 year old. Blakely is 12 pounds of pure joy but with her sickness it has brought a lot of doctors appointments, hospitalizations, and recent changes to her overall health. Blakely has experienced a rough few months and has been sick every month since November. The colder months are not kind to her, she has had 2 scary hospitalizations in 2 months and several appointments back and forth to St. Louis. Some new changes for Blakely’s care include G-Tube only feedings, sleep study’s, and a swallow study to come. Blakely is on 100% oxygen and she does not like it. Matt and Lauryn are in the middle of balancing all of Blakely’s appointments, therapies, and working full time jobs…. On top of also caring for Blakelys little sis. Lauryn is completely out of her sick and vacation days. They have applied 3 times for disability for Blakely and have been denied everytime… Blakely is a happy and sassy girl but she is sick… Blakely diagnosis of ML2 is something so rare and so unfair that most of us look at Blakely with rainbow colored glasses because she is the sweetest and strongest girl around. But the reality is she has a terminal diagnosis that makes it impossible for her to live in a way that other kids do. We are so grateful for everyone that got to meet Blakely at Magpie and ask questions about her Diagnosis. The more questions equals more awareness! Matt and Lauryn do such a great job spreading awareness and sharing her story with our community but we don’t always see her bad days.. there are days that Blakely screams and cry’s during her physical therapy because she is in so much pain, or days that she sleeps all day long because her body is not healthy, her family is so grateful for all the love and support the community has given over the last 2 years but right now Blakely is needing all the prayers you can give. In honor of Blakely’s birthday coming up I would love to do a donation for the Brown family. The last several months have brought a lot of unexpected bills and helicopter rides that cost and arm and leg. With no time left Lauryn is having to take unpaid leave and that can be added stress that no family needs while caring for their sick toddler. Thank each and everyone of you so much. Please feel free to share. Nothing is expected but everything is appreciated. If you come across this and are new to Blakey’s story then I’ll post a little tad bit below.

If you would like to donate but would rather use a different source Venmo is Lauryn-Brown13

Thank you, Thank you, Thank you.

Blakely was born at 26 weeks gestation and spent 107 days in the NICU. Blakely was diagnosed with a rare genetic condition called Mucolipidosis (ML2) or known as I-Cell disease this is a very rare 1 in a million disease.

There are only 70 cases documented in the world.