Elijah is our little warrior.
Imagine having inflammation between your brain and skull, resulting in meningitis, once a week on average all your life.
Imagine the suffering.
The inflammation caused high-frequency hearing loss, and Elijah is very lucky that he hasn’t gone completely deaf and blind.
Elijah, our twelve-year-old grandson, is very lucky to be alive at all because he was born with a rare often fatal, genetic disease.
We only received the diagnosis 4 weeks ago and I have gone through a roller coaster of emotions since then.
On the one hand, I am so relieved that Elijah’s problems are finally taken seriously, and that it is caused by a very rare (one in a million) genetic disease.
And the best news is that there is medication for it.
He needs to inject himself with Anakinra every day for the rest of his life.
Immediately after his first injection, Elijah started to come to life.
Within a day, he had energy, and he was able to eat normal foods.
The change was shocking and stunning.
On the other hand, I personally have been going through a whole month of intense grief processing.
My happiness is mixed with deep sorrow, that it has taken so long for us to find the solution.
I always suspected Elijah had something organically wrong with him because my healing sessions didn’t put a dent in his symptoms,
But, I feel horrified to think how life-threatening and debilitation his disease has been, and how much he has suffered, right from conception.
It was the worst feeling to hear him cry in agony from joint pain, headaches, and rashes.
I also know that Elijah is very brave and only cried when life became unbearable.
I remember driving home with him one day when he got an attack from Rheumatoid Arthritis.
We now know that it wasn’t RA, but at the time, this is exactly what it looked like.
The attack started along Lillico’s Road, some 5 km away from Forth, and by the time we got home, he was a mess.
The only thing I could think of was a hot magnesium bath.
10 minutes later, the screaming subsided somewhat, but by then I was sobbing.
I just had no resistance to seeing him in agony, and I worried for Lisanne, my daughter because she was a single mum and had to deal with this on her own.
Elijah was about 4 years old, then, and he had already suffered from chronic anaemia, an enlarged heart, RA type inflammation in his joints, especially his knees, but sometimes his wrists or ankles.
He had to be on a strict diet, otherwise, he would get anaphylactic type reactions, with skin rashes and vomiting, followed by spiking temperatures.
Despite being super careful, this would occur at least 2x weekly.
He often cried at night and was a fussy eater.
Luckily for Elijah, his mum was super patient.
When he was a baby and they lived with us, I would often hear Lisanne sing for hours at night, to help him sleep.
Cohen his twin brother has always been very placid and easy too.
Between birth and age 5 he was under the care of different doctors.
Yet, he still started to go blind at age 5 ‘out of the blue’.
And, it was picked up by us, not the paediatrician.
The most frustrating part of the journey was that all these different doctors and specialists didn’t see the whole picture.
One Doctor wanted Elijah to take methotrexate which is like a chemotherapy drug.
Another doctor wanted to blast him with steroids.
We were afraid that these drugs would kill him because his overall health was very precarious.
So, we decided to stay below the radar of the medical world and control his symptoms with diet and healing sessions.
We put him on a very strict diet of only meat and meat fats.
Within a few short months, his eyes had completely recovered, and on his meat diet, his skin improved.
His immune system seemed to settle down.
However, his knees continued to grow enormous deformities.
He also had very little energy, couldn’t run and had to watch life pass him by while his twin brother, cousins and schoolfriends engaged in fun activities.
Just in the last twelve months, Elijah’s health deteriorated.
While the rest of the family had a wonderful summer full of adventures, Elijah languished, spending a lot of time on the couch, and suffering from meningitis, anxiety, and depression.
His body was basically scraping the bottom of the barrel, and I was constantly worried that Elijah wouldn’t live much longer.
The thought of it was unbearable.
As a family, we would often discuss Elijah’s options, but none of them seemed very hopeful.
Then there was this awful guilt that I always felt when it came to my own grandson.
I couldn’t help him, yet I could help everyone else!
At the start of April, Elijah was reinvestigated in the Royal Children’s Hospital in Melbourne.
The family at home was hoping and praying that a miracle would happen and that the paediatric team would find a new angle on his problems.
They hadn’t been able to help him when he was younger.
We didn’t have to wait long.
On the first day, the very first paediatrician who looked at him recognized all his symptoms as NOMIDS disease, which stands for Neonatal Onset Multi-System Inflammatory Disorder.
It made perfect sense, because 12 hours after Elijah was born, he went into foetal distress.
His breathing became very difficult, and they had to blast him with a cocktail of antibiotics, thinking that he had caught an infection.
Because Elijah’s skin is so nice and brown, his hives didn’t show up as much as in pale-skinned people, and nobody put two and two together.
The 3 most telling NOMID characteristics are blisters and hives all over the body, inflammation of the joints, especially the knees and inside the skull, affecting the ear bones too, and digestive issues.
All this results in severe pain, right throughout the body.
NOMIDs can’t tolerate cold.
If they get cold it will result in hives, followed by vomiting and spiking temperatures.
While I was beating myself up for not being able to help Elijah, I now realize that he has dodged a million bullets.
Untreated NOMID leads to stunted growth, brain damage, deafness, blindness, crippled legs, and bony formations in different parts of the body.
The body stops growing at age 12 because there is no energy to grow.
Many NOMIDs die young.
Elijah passed all the tests in Melbourne with flying colours.
He has no brain damage, his eyes are clear, and has slight hearing loss, and all his organs are functioning well.
Thanks to the carnivorous diet, his digestion is very strong. (plus, supplementing with magnesium, iodine, enzymes and beet flow)
Since starting the injections, Elijah is enjoying life like never before.
The swelling in his knees has gone down, and he now hardly has any pain to speak off.
While he can now eat almost anything, Elijah wisely decided to remain on a paleo, low carb, high-fat diet.
In one month, he has grown 1 cm and put on 2 kilos!
And he spends all day playfighting and wrestling his twin brother, making up for lost time.
I can’t get enough of his wonderful grin.
Elijah is the biggest miracle of my life!
Here is a photo of Elijah eating his first lot of eggs in 9 years!
The smile says it all!
Please share this story with loved ones.
We need to raise awareness of NOMID disease because I wouldn’t want any other child or parent to suffer as Elijah did.
Knowledge is power and freedom!
Thanks for tuning in,
Pete, Grada, and Elijah.