Noah and Gracie :

This is probably the most difficult update I’ve had to give, to be honest I’ve tried so many times to do it but I just didn’t have the words . As you know Noah had been in hospital to have a lumbar puncture done, we were trying to find out why he was having migraines, it showed no raised pressure but slightly low pressure, so that also could cause headaches.
He has since been put on new medication for his headaches and thankfully they seem to be helping at the minute. Please pray this continues!

Heartbreakingly Noah has continued to deteriorate he now is very weak, mostly Noah had mobility issues and after Christmas he lost his mobility completely but now his body all over is getting weaker and he finds it difficult to even sit on his own. His speech is a lot slower and he finds it difficult to remember words. Noah has also had issues with urgency in his bladder, but this has gotten worse in recent months especially as he’s lost more muscle tone, this means looking at other options for Noah to make life more comfortable for him, possible cauterizing.

In hospital different specialist came to see him it was discussed as to weather or not he needed surgery to lengthen his hamstrings or increased Bot-ox to help with the pain in his legs. We decided surgery will only be a last option so Noah will have his Bot-ox on Friday, hopefully this will help.
Every time Noah deteriorates we go through a new level sorrow and grief, it’s like a deep and violence sorrow! We are trying to live as normal as possible or but somehow recently everything is heightened, every time you hear a parents conversation about their children and how well they are doing, what the hopes and dream for them, universities, jobs, girlfriends, riding a bike, entering competitions my heart breaks all over again, not for me but for Noah.

Please don’t get me wrong it’s perfectly normal for any parent to feel and want these things for their child ! And please don’t stop them if I’m about, I understand it’s the way it should be, it’s just difficult when sometimes the thing we celebrate the most during the day is when Noah’s able to go to the toilet right away as opposed to spending hours on and off the toilet!
Every time I post I think the pain and sorrow can’t get any worse, how wrong I was and have now realized that it will keep getting deeper. I can’t describe in words the anguish we feel as a family , watching Noah go from the really happy joyful wee boy to a child know can barely sit up at times is unbearable. Noah is feeling very frustrated at times and it’s so difficult for him to try and understand what’s happening to his wee body ! And yet he still trusts God to keep him safe and he continually prays for his healing as well as healing for others. If that’s not God working in his life, I don’t know what is!

I’m still asked how I believe God is good, and my answer is still the same, I feel it in the very depths of my heart, even though my mind can’t fully comprehend Noah’s suffering, I don’t understand it but still know in my heart God is good and loving.

I know some who had suffered lost or other pain may not agree and that’s absolutely fine, I wouldn’t dare speak on anyone’s else grief or pain, but I can speak on my own sorrow, and I know but I know that id rather walk this journey with God than without him.

We get so caught up in looking for the answers as to why suffering occurs , sometimes we are just simply never going get those answers, but unfortunately in the process we waste so much time being anger and bitter.

Don’t get me wrong anger is OK it’s perfectly normal except when it consumes and controls us so much that we miss the living and the beauty all around us.

I don’t know why!! All I know is my HOPE is still in God to get me through and to get Noah through this journey . As a Christian, we somehow believe that it gives us a free pass to a wonderful pain free life, it’s not true, in the bible it says we are called to share in Christ’s suffering, God never said it’d be easy! But he did said he never leave us or forsake us!

So all we can do is keep walking in faith an believing that no matter what we face God has never left us and is with us, even when we feel alone keep walking and trusting in his Love.

We are asking as a family that you please continue to pray for Noah and all the difficulties he faces each day. Pray that his relationship with God is strengthen at this time , that he would feel God comfort and love around him in a deeper way!

Also pray for Gracie that she continues to keep well. Pray for Greg that God would reveal himself in a new way. Pray for our extended family as we try to cope together.

Most of all pray Gods will be done in all out lives as a family and that we can live this life honourable to our father in heaven.

As always out heart felt thanks for your continued support and prayers. Please share as much as you can so more people can keep us and especially Noah in prayer.

Psalm 23 has greatly encouraged me recently, as some think it’s not about death and only read at funerals, for me it’s about Gods peace and restoration in difficult times about being still and allowing him to hold you. His guidance and comfort through the valley. Keep your eyes on Jesus!

Update: Noah — diagnosed with VWM Oct 2009, earned angel wings July 17, 2019.

Gracie — diagnosed with VWM Oct 2010

Much love
Coates family xx

Together with #SavingChloeSaxby we are raising money to research and cure VWM. Life-saving breakthroughs are made on very tight budgets. So your donations will make a difference. They may save a life. Please consider being counted:

Support VWM research by donating:
1)
http://www.savingchloesaxby.com/
2)
https://www.crowdrise.com/FindaCureforVWM
3) By check to : AFTAU
39 Broadway, Suite 1510
New York, NY 10006
Attn: Joe Huber/Orna VWM research****Note: All 3 ways above go directly to Prof. Orna Elroy-Stein VWM research **

Please watch and share this video:https://www.youtube.com/watch?v=tuh899edPOQ


Originally published at noahandgraciecoates.com

Leukodystrophy Awareness

Find a Cure for VWM

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It is all about raising awareness for leukodystrophy called vanishing white matter disease (VWM) ~ while searching to find a cure...!

Leukodystrophy Awareness

Raising Leukodystrophy Awareness while searching to find a cure for Vanishing White Matter Disease (VWM) -VWM is a rare genetic disorder that results from mutations in a gene known as EIF2B.

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