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Help our brave little Ayla-Jeans baby girl who has been Diagnosed with 2 Rare Conditions. Give her a fighting chance

Closed Cause page created in the Health category by pauline abraham for "My beautiful niece Ayla-Jeans and family"


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this page is to help raise funds for my sister , baby girl Ayla- Jean and family to help get her treatment to give her a fighting chance

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  Auckland

The past few weeks have been challenging for our family.

Our baby was just over 2 weeks old and we were sitting in Middlemore Hospital Emergency Department surrounded by 30 Drs/Nurses fussing over little girl whilst she was having a seizure...

Prior to this Ayla-Jean was doing jerking movements & I thought it was just her getting frights when the kids were playing around BUT she was doing this in her sleep.

I immediately had a funny feeling about her jerking... Thought Id just sleep on it& see how she was the next day...It continued but no fever/crying etc so I let it sit in the back of my mind. Came to Saturday (4days later)

Her bath time Saturday Night...

Her eyes were shaking and rapidly moving from side to side... I phoned helpline and described what she was doing... She immediately phoned the ambulance and we were standing there watching our little baby being handled by all these Drs at Middlemore ED.

They had no choice but to put her in an induced coma as the seizure she had lasted 10minutes & was too much for her little body.

She was in ICU & within 2 hours she was transferred to Starship Hospital to PICU.

So many tests done and they still didnt understand why this had happened.

3 weeks old and she was diagnosed with Opsoclonus (Rapid eye movements) Myoclonus (Uncontrollable Spasms of the muscles) Syndrome.

After treatments and further tests she has also got Calcium in her brain. Which is another rare disorder.

So for our 8 week old baby she has been diagnosed with 2 rare conditions.

OMS effects her development. (Walking/talking/eating/balance etc)

Calcium in the brain also effects her development also. So for her age having 2 different conditions that both effect her development is so much harder.

Starship Hospital has practically been our second home since she was 3weeks old. She has monthly admissions for her steroids and specialists are trying their best to do a safe treatment plan for her as she is the youngest to ever be reported with these conditions.

Calcium in the brain only worsens over time also.

My only message her is to ALL Mama’s/Dads out there!

- TRUST YOUR GUT!

We (and I speak for both families with the support we have) Have a long journey ahead of us but are willing to do anything and everything to ensure our baby girl gets the best care that she needs.

She is perfect to us and is surrounded by so much love!

We are staying strong for our baby, and it saddens me to see all the beautiful babies in Starship with severe conditions too.

Cuddle your loved ones tight! Because if it wasnt for all the capable hands that helped our baby that night we wouldnt be holding our baby girl in out arms today!

Shout out to ALL NURSES/DRS and people studying to become one! Because you are all bloody amazing! I have a new found appreciation for you!

She has updated on the two rare conditions that baby has

-Calcium in the brain (FAHRS disease)

-OMS syndrome

OMS alone already has delays with her development. (Walking/talking/balance/eating/behavioural issues etc etc)

The calcium in the brain also effects her development. Which is going to make her development more difficult as the side affects are much more severe.

Farhs disease is a rare, progressive neurological disorder that in babys case is hereditary. This is inherited from both parents. (Inherit the same abnormal gene from both parents) With the calcium being in her brain is has harmful effects and interfered with the working of the brain which causes a variety of debilitating mental and physical symptoms that only worsens over time.

So you could just imagine how difficult it would be for anyone to have 1 of these let alone 2. Especially at 8 weeks old.

So the specialist has advised that baby will be getting admitted once a month for her steroids. & with her having the both of these conditions she will have more treatments!

She will be getting a development team together for baby to do physio/speech therapy etc etc with her having these conditions.

We also have her audiologist appointment on Friday, so fingers crossed that goes ok.

The specialist has also advised that Ayla-Jeans case is more rare then 1 in every 10million as she has both of these conditions.

So everything she is going off is from Specialists in America/Australia’s advice/opinions on treatment plans etc. There are no facts in regards to treatments to cure or manage these conditions. Which means we are going to be left in limbo for a long time.

She is presenting babys case in Australia to other neurologists to be able to get more advice for her treatment plan.

At this stage we have just been told that she is to not be around anyone that is sick because she is immune suppressed from her steroids. She said I have to really anal about who is around her, shes again asked that I dont have her around kids. Anything she may get (fever/virus etc) is life threatening for her.

So that is where we are at at the moment. Pretty cut throat but all we can do is bloody pray for the best and hope to god a genius is amongst the neurologists that she presents babys case to!

Hope everyone has a good day and Love you all!

***** UPDATE ON AYLA-JEANS Conditions ***********

This week we have received some heart-breaking news. We are devastated to say the least and just lost for words. Our poor baby has the worst type of Aicardi-Goutieres Syndrome. (T-REX1). All the experts her specialist has been in contact with have advised that she not do the treatment because they cannot promise that it will work.

Its works like this…

Her body/brain thinks it has a virus (but it doesn’t) and it is attacking itself. With this type it can range from moderate to severe. She is severe and because of this they cannot promise that the treatment is going to be of any help to her. Her specialist has advised that they do not want to do treatment because they don’t want pick/prod and put her through pain with what time she may have left.

We were told that our little girl may not make it to her 2nd Birthday, if that….

We are a part of two support groups. These support groups have parents/caregivers of children with either Aicardi-Goutieres Syndrome or OMS.

So Gutting to hear, but as a Family we will rally together to support and be there for what ever they need ......

Thank you to everyone that has already help so far xxx

pauline abraham's involvement (page creator)

My baby sister and her family are facing long term challenges with her 9+ week old baby girl Ayla-Jeans who has been diagnosed with 2 rare conditions (OMS and calcium on the brain) which both conditions have challenges associated with them and that have specialists here in nz stumped. She is the young person /baby to be diagnosed with these conditions.we are hoping for a cure one day but for such a young family to have to be dealing with this its hard, so if we can help in anyway then pleasse do.. my sister would never ask for help , so i will do it on behalf of her.. She was born and raised in Northland and has helped many out, now its her turn to please be helped.... thank you

Use of funds

These funds will help with cost for hospital visits for Baby and for accommodation closer to the hospital for all of them as they are a unit and stay together where every they go.. All funds with go towards baby Aj for what ever she needs.

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Latest update

Update on Ayla-Jeans Conditions and next steps to find a cure hopefully  11 August 2018

Posted by: pauline abraham

We are so overwhelmed by the love and support all our friends and family have shown us. We cannot thank you all enough for the kind messages, sharing our babys story, and doing all that you have.

Every comment we read had us both in tears. I couldn’t help but think we have fucking awesome family and friends, and even strangers! We love you all!

This week we have received some heart-breaking news. We are devastated to say the least and just lost for words. Our poor baby has the worst type of Aicardi-Goutieres Syndrome. (T-REX1). All the experts her specialist has been in contact with have advised that she not do the treatment because they cannot promise that it will work.

Its works like this…

Her body/brain thinks it has a virus (but it doesn’t) and it is attacking itself. With this type it can range from moderate to severe. She is severe and because of this they cannot promise that the treatment is going to be of any help to her. Her specialist has advised that they do not want to do treatment because they don’t want pick/prod and put her through pain with what time she may have left.

We were told that our little girl may not make it to her 2nd Birthday, if that….

We are a part of two support groups. These support groups have parents/caregivers of children with either Aicardi-Goutieres Syndrome or OMS.

This has been massive for the both of us because so many parents/caregiver have a shit load of knowledge. Its so supportive and it honestly gives us hope.

One parent has said…

Remember, a doctor cannot place limits on your child. Your child will be the greatest teacher to you and as difficult and heart-breaking as this is right now (trust me, I remember), this life actually becomes very normal after a while.

She was told her son wouldn’t live past 4 months and he is now 5 years old..

For us its about taking one day at a time and living in the moment. Not thinking about the what ifs…

After all the tears, and no they haven’t stopped and probably wont anytime soon. (Actually crying as I write this)

We have been up until stupid O’clock every day to see what we can find out and how we can help our baby. We’re hoping were on to something as I have had some useful feedback from the support group. A Dr. has been in touch from Philadelphia to recommend that Ayla-Jeans specialist get in touch with her… Fingers crossed something comes out of it…

Life is what you make it. Every day is a blessing for our family and with the support that we have like our son said….

“WE GOT THIS MUMMY AND DADDY”

Love to you all once again, and thank you all for keeping positive for our baby because we sure as hell ain’t letting it bring us down! 💪🙏💕

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Latest donations

Tai Toki-Rogers
Tai Toki-Rogers on 03 Apr 2019
Private
Manu
Manu on 27 Dec 2018
I just saw and old article in the NZ Herald and just had to hope that everything is as okay as can be. All the best.
$50
Shaw Whanau
Shaw Whanau on 10 Nov 2018
Met a lady at PK Beach, Perth and she told me about this pepi. Ma te atua koutou hei manaaki. Arohanui
$20
Emme B
Emme B on 28 Oct 2018
Wishing you all the luck and love
$100
berit
berit on 25 Oct 2018
$10

Who's involved?

pauline abraham's avatar
Created by pauline abraham
Jordan Abraham's avatar
Paying to a verified bank account of Jordan Abraham on behalf of My beautiful niece Ayla-Jeans and family

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This page was created on 12 Jul 2018 and closed on 12 Jul 2019.
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