A journal by Vickii

My son who is nearly 4 months old has just been diagnosed today with Menkes & we’re currently in hospital due to his seizures. To be completely honest I’m broken and don’t know where to turn. The doctors have explained they expect him to live between 4 & 10 years. How have you guys dealt with this? Because I can’t even understand it right now..

I really did have so much fight at the beginning of this diagnosis I only found out the 12th October but it’s drained from me.. it’s so suddenly taking my boy from me.. how does it all just happen so fast? I’m still hoping for the best & praying for a miracle.. but it’s so hard to stay strong.. he’s seizing constantly and doesn’t sleep for days on end… he has periods of time where he refuses milk for days 😔 I’m so scared right now.

Last month we were faced with the worst news of our lives.. it crushed us completely & turned our world upside down.. but seeing our boy defy the odds & carry on has made us stronger then ever. So it’s time to get this out there to the world and try to spread the word about this horrific diagnosis.  We have researched TJs condition until we can’t anymore, cried through sleepless nights, prayed, fought through the so-so hospitals and have been denied any bit of help.

But, looking back on this month… it has TAUGHT us.  It has taught us how to love ❤️ unconditionally. It has taught us that there are other families out there in the same situation and need the love and support that we strive for.  It has taught us to have faith 🙏 in God for He is more powerful than all. It has taught us how to be better parents to TJ and to Zareiya and not to take one single moment for granted.  It has taught us to keep the faith even when you feel you can’t go on.  It has taught us that it’s OKAY to let your guard down because family and friends will be there to help.  It has taught us that TJ is here for a reason and for that we will do anything and everything for him.

Please say a prayer 🙏 for every child out there with this diagnosis.  We need to raise more awareness to this diagnosis and through this month of awareness I hope we can get the attention required for hospitals to add this test in addition to the screens done in pregnancy & at birth.  ❤️🙏💙

I look into an early picture of TJ when he was under 10 days old (just about) he looks ‘normal’ right? Just premature, like he’ll grow into himself a bit.. Yet if we look more closely we could have diagnosed him right then & there..

1.  He was born prematurely
2.  He was jaundiced (quite badly)
3.  He couldn’t regulate his body temperature
4.  He was irritable
5.  He kept his body tucked up (frog legs)
6.  Severe dip in his chest (Pectus Excavatum)
7.  Sagging skin
8.  Struggled breast feeding
9.  Frizzy Hair
10.  Jerks (which they said were him adapting to being born early)

Do you see how ALL of these symptoms can be dismissed as being born prematurely? Yet they are so crucial in playing a part in diagnosing a baby before the 10th day! This is why YOU need to know what to look for, this is why newborn testing SHOULD include Menkes. All of these symptoms were dismissed but were so visible if you knew what to look for. We could have done something! If we had diagnosed him before 10 days old he could have been treated with copper histidine and had fewer symptoms.