Makaya's Journey

Wanted to share that because of you guys, the support, and donations, especially the anonymous donation that was made for the remaining amount and the amazing donation of the puppy by the breeder...one of these beautiful girls will be Makaya's very special Service Pup!

Makaya had a very very important Dr's appointment today with the genetics clinic at children's! As long as insurance pulls through she has been approved for the full 22k exome sequence testing! Otherwise known as the full panel! Hoping for some answers finally.

Someone was having a good day today and wanted to learn how to make her own burgers!

Update on Makaya

She had a Physical Therapy evaluation yesterday and she is doing things she is suppose to do developmentally but she just cannot do them for long or her body and joints give out after a short period of time. We have to focus on strengthening but they do not do that in their facility until the age of 8 and older. We have a few exercises at home but are now in search of aqua therapy to help with her strength.

https://gofund.me/83cce413

I created this a few days ago but just haven't had the time to finish it up and post it. Feel free to share and spread the word to help Makaya get her much needed Service Dog!

Service Dog for Makaya, organized by Staci Reed As most of you may know, Makaya has many health conditions that she needs round the clock care for … Staci Reed needs your support for Service Dog for Makaya

Please say a prayer for Makaya today that she has less pain and more energy. She fell asleep at 630pm last night and slept until 630am today. She has had a few rough days with pain in her legs and hasn't slept good. Hoping today is a better day.

Some of Makayas medical Journey includes....

Ehlers Danlos Syndrome
Von Willebrand Disease
Dysautonomia
Poor eye sight
Hypotonia
Seizures
Hearing loss in one ear
Blood pressure and blood sugar issues
Severe pain
Dislocation of joints
Failure to thrive diagnosis
Gastroparesis
Scoliosis
Muscle weekness/deterioration
Speech delay
Mental delay
Retention deficit ..the list goes on

But even with all if this she still wakes up every morning and smiles.

If some of you don't know, Makaya is a sweet but spicy little 6 year old. To look at her, you see a smiley, giggly, sweet and bubbly 6 year old.

Makaya's medical journey honestly started before she was even born. I (her mom) ended up having severe pre-eclampsia along with preterm labor with Makaya. The hospitals were able to keep her safe for a little while longer but she made her grand arrival nearly 2 months early. The Dr's and I both knew that something was not quite normal. Makaya's hips were displaced at birth and she was in a "split" position. It wasn't until I myself started having severe complications after having her that I was then diagnosed with Ehlers Danlos Syndrome, a genetic connective tissue disorder that affects individuals in so many ways. Anywhere from mild to severe medical issues. ( I will post some articles explaining the disease and how it affects us in so many ways). Makaya ended up inheriting Ehlers Danlos from myself, in addition to Von Willebrands disease (blood doesn't clot).

Makaya has many other medical issues that go hand in hand with Ehlers Danlos which I will further explain but some we don't even know yet. She will be soon getting a full genetic panel done to hopefully finally get some answers. But for now my girl keeps on smiling no matter how much pain she is in or however bad of a day she is having!

No matter what she is always smiling 💜

I am creating this page so I can keep everyone up to date on Makaya and her medical journey!