✨❤Hope For Miraiya❤✨
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Hello...thank you for taking the time to read my page. Please take a few minutes and enjoy these pictures of me. I am a very happy girl that loves attention and give hugs.
4 minutes after emergency C-Section Miraiya was born you can see her for a few seconds in this video then she was rushed to get clean and warm and got to see daddyâ¤
My name is Miraiya Breann I was told I have white matter in my brain and may have a rare disease leukodystrophy. Mommy and daddy know there's no known treatment or cure for this.As of right now Miraiya cannot get further testing done her insurance won't cover the procedures which makes it longer for her diagnosis.
She needs genetic testing and a MRS which assess regional neuro chemical health and diseases and is therefore the most accesable diagnostic tool for clinical management for neurometabolic disorders.
Without this procedure we will probably never find out which leukodystrophy she has. There are more than 40 cases each are life threatening and incurable. The cost for the MRS alone just for her to use is a steep $3,500 alone not including her getting sedated or the use of oxygen and being hooked to a heart monitor, those fees are around $350.
For her genetic testing her visits are costing her over $2000 not including fees and her neurologist said they have to be shipped out of country for the test and will take over a month just to get results. These are just some of the many test that aren't covered. She goes to physical therapy now but that only covers 12 visits and each visit are 1 hour sessions that run $150 .She goes to that 2 times a week and her transportation care on wheels only covers her until August 2014.
That's runs her insurance $40 round trip that's also 2 times a week. After that she won't have transportation to get to her therapies. This doesn't include cost for Speech therapy,eating and OT therapy.
The rest will have to be out of our pockets. The doctors are waiting for answers since her insurance can only go so fast. It's been 3 months now and we still are waiting on a diagnosis. Love and support is my only option right now.I Enjoy being around people and I know that I am special and strong. I believe in faith and god put me here for a reason.
This was taken 5/5/14 Very happy miraiya
Welcome to my page please take a moment to read what this precious girl is going through.... This is my beautiful daughter Miraiya.I couldn't have asked for such a perfect baby. Mommy had a perfect pregnancy right up until delivery.
And Here's where my story begins ...my mom was 9 1/2 cm dilated for 4 hours my head was stuck in the birth canal, the doctors told my mom to push but my head just kept getting stuck. Finally they rushed a emergency C Section. Couple minutes later I was born into this world. 6 lbs 15 oz beautiful baby girl... Along with13 hours of labor.
The doctors said I had swallowed some melconium and I couldn't breathe so I couldn't be held right away. Hours later mommy finally got to hold me and I was having trouble breastfeeding. My face turned blue and I have to be rushed to the intensive care right away. From there they hooked me up to machines. I had a needle in my head tubes down my throat and nose. I had to be put on oxygen and fed through a tube.
My vitals weren't getting any better so I had to be rushed to a different hospital with an intensive neo natal unit for special babies. There the doctors did a X-ray and found out that the other doctors had put the tube down too far and it was pumping air into my stomach. I could've died right there.... Luckily the doctors there put another tube down my throat and got the air out......
I still wasn't breathing well on my own and had to have a Pic run through me. I was in the incubator for 8 days mommy and daddy couldn't hold me alot and I still couldn't breastfeed right away. Finally day 8 came by and I was off all the machines and eating well and got discharged so I got to go home.
I loved playing with toys with lights and watching sesame street. Elmo is my favorite. I hit all my milestones on time, I was even teething at 5 months. 9 months I can crawl scoot and even climb on to things and get down fine.. I cruise around the house holding on to things very well too.
Right around 10 months mommy started to notice some head banging and the shaking "no". She thinks it's autism but her pediatrician said its too soon to test and that head banging was normal. 12 months roll by she's not waving bye bye.. No dada or mom.
I don't follow commands well and like to arch my back alot. I am still trying to learn to stack blocks but just bang them for now. I am still only cruising around the house at this time. I don't respond well to my name so mommy took me to get a hearing test done and they said my hearing is fine. I don't point at things but I know how to give and take.
When I was just a couple months old I had rapid head growth and hypotonia (low muscle tone). After questioning my development at 1 year old, I still wasn't walking, talking, or doing other typical toddler behaviors. I still would bang my head on every thing and shake my head side to side. I still do that till this day. So at 13 months we went and got her checked out at a neurologist and he had ordered a MRI to be done.
Results came back and doctors suggested a rare disease known as leukodystrophy. It is a rare disease no cure or treatment. Once diagnosed most kids have 7-10 year lifespan depending on the severity.It has to do with the white matter which Miraiya has too much of they said.. The child starts to learn things and then at a certain point they start to regress and loose what they learned and there's no fixing it. Early treatment is my only option right now.
After finding white matter in her brain in the MRI she is now being tested for alexander disease which is another form of leukodystrophy. I'm being tested also for other metabolic diseases. Miraiya has already gone through lots of blood work and urine test and plenty more still to come.
One of them was lysomal storage disease. Metachramatic leukodystrophy was the test and it took about a month to get back the results and when we finally did mommy dropped to her knees in relief that I didn't have that type of leukodystrophy.There are still many more tests to be done but only now her insurance just informed us she might not be able to see genetics nor get a MRS done to give us some hope on my diagnosis.
At 16 months I can walk 8-10 steps big improvement in the last month. Still no talking but i enjoy sitting and looking at books. I can't swallow solids but I love anything pureed or ice cream. I love being outdoors and playing in the grass. I am behind on my fine motor skills and speech. Mommy and daddy took me to see a optomitrist and so far her vision is good but when they looked into my retina they saw cupping behind it. We were told that's normal for kids who have something wrong with the brain. I am a very happy girl and brings joy to anyone who's sees me and is only improving in walking.
We are just looking for answers for our daughter so anything that can help us be able to come closer to a diagnosis by doing these tests we would appreciate more then words could express.LIke I mentioned before I'm currently in physical therapy 2 times a week insurance will only cover 12 sessions and I know without therapy there's little hope on me getting better, I start OT therapy soon and speech therapy.
Mommy and daddy currently don't own any vehicle so I get as much help from my insurance they are only covering my rides until August. Early on programs come out to my home and play games with me and help me walk and help with my fine motor skills.
Miraiya is my miracle baby since the day she was born. We are just looking for answers and praying everyday.Please share and donate to support the diagnosis for Miraiya. Each donation puts her closer to her diagnosis so more test and early treatment can get started.
UPDATE: Today Miraiya went and got tested for autism since the doctors just want to start ruling everything out. She was showing some red flags and her doctor referred her to see a autism specialist but they won't be able to see her until she's 18 months. Her pediatrician doesn't think it's autism and is leaning towards the Alexander Disease.We won't know the results in that test for another month or so.
If anyone has any support sites please contact me Thank you for reading our page and have a blessed day.
Organizer
Kira Sutkay
Organizer
