Behind the scenes of the Robertson family.
Spoiler alert: This is the story of Elijah, my twelve-year-old grandson, who has struggled with severe mystery health problems since birth.
Today, I am over the moon, and I want to tell you about it.
For those of you who are interested in the entire story right from the beginning, I have included excerpts of my upcoming third book here. (get your tissues ready)
If you are in a hurry, skip to the part that says: Back to the present.
It’s Aug 21st 2009, I am standing next to my daughter’s theatre bed. My twin grandsons are about to be borne by C-section at 37 weeks of gestation. Lisanne had experienced a couple of big scary bleeds, one at 32 weeks and another one at 34 weeks. She had been confined to bedrest after the last one haemorrhage.
At exactly 9.30, Elijah is born. After a very quick check over, he is wrapped in a blanket, and given to me, to show to his mum.
Cohen is next and needs a little bit of attention but a few hours later all the excitement has died down and the twins are safely snuggled up together in a cot next to Lisanne’s bed.
My heart bursts with joy when I look at my twin grandsons sleeping blissfully unaware of their new surroundings.
Our happiness is short lived and replaced by concern when Elijah goes into respiratory distress that night. There is no infection. His distress is a mystery, and his little vulnerable body is poked, prodded, monitored and put on very strong antibiotics. Nobody can figure out what caused him to go downhill so rapidly, and the medical team throws everything at their disposal at him.
They are still doing that 3 weeks later, without any improvement on Elijah’s side. When we turn the heat on to the paediatrician, a decision is made to send him to ICU in Hobart.
Miraculously he recovers within a week of receiving the best of care at the Hobart NICU and finally the twins can go home 4 weeks after they are born.
The twins are breastfed for 1 and 1/2 years. During this time Lisanne takes care to supplement with magnesium, zinc and other immune restorative products and she eats much organic food as possible.
We started to notice a significant difference between Elijah and Cohen by the time he was one year old. While his twin was walking around Elijah hadn’t even started to crawl. His muscle tone was so poor that his head was too heavy for him and whenever he lost his balance it would plonk on the floor with a thud.
I don’t know how many times he fell on his head. He managed to take his first steps just before he turned two years old. By then we knew that Elijah had some serious health challenges. He was always dangerously anaemic, had an enlarged heart and had extremely poor muscle tone. He was a finicky eater, had spiking temperatures every 2 or 3 days followed by vomiting (not unlike an anaphylactic reaction), did not sleep much, broke out in rashes all over his body, screamed a lot and suffered from anxiety attacks.
The heart specialist was really concerned for Elijah’s heart, which was four times the size it should have been. However, he was extremely respectful of Lisanne. I was present when he complimented her on his overall health, because despite his inability to thrive, he never suffered from common colds or sore throats. He really boosted her morale, which was much needed, because Lisanne had received such conflicting information since the twins birth.
Elijah’s first pediatrician had been disastrous for him and Lisanne, and we refused to see him on our return home. The second pediatrician didn’t prove to be any better.
When Lisanne asked him what she could do to stop him from screaming (we now believe he had joint pain) he was adamant she stopped breastfeeding!
Thankfully, Lisanne had more sense than that. Breastmilk is what saved his life, because soon after he was weaned, after the twins turned two, his allergies worsened.
His pile of medical records grew by an inch every year, but we were no closer to a medical diagnosis or a solution. He had been tested for gluten intolerance but been given the OK. (However, we never gave him gluten). He underwent a series of medical tests at the Royal Children’s Hospital in Melbourne where they recognised the severity of his problems, but once more Elijah fell between the cracks of the medical system as his history got gobbled up by the Bass Straight. (His GP never got the results from Melbourne.)
Back at home we tried everything. We gave him a small amount of key minerals such as Boron, Magnesium, and Iodine, as well as strong iron supplements from the GP which made him constipated (and rotted his teeth).
Lisanne sprinkled extra probiotics over his foods, and she would wrap castor oil compresses around his painful joints at night.
When he was three years old, he developed what looked like Juvenile Arthritis and by the time he was four, after a year of inflammation, his knees were enormous, and the muscles on his thighs were wasted, making his knees look even bigger. Sometimes the arthritis would travel up into his wrists or ankles and he would scream in pain, and the sound of it pierced my soul.
Together, we did everything we could to relieve his pain. Hot baths, compresses, essential oils, healing sessions, clamp down on his diet even more, you name it, we did it.
I wondered if he had an obscure African disease with Elijah being half Nigerian, but it wasn’t anything that the Melbourne children’s hospital could identify.
I gave Elijah as many healing sessions as possible. In fact I was always quietly giving him healing energy. How could I not? I sometimes wondered if my healing sessions muddled the medical picture. It was bizarre how all the medical tests continued to show up nothing, when he was clearly suffering, failing to thrive, and severely challenged in many areas.
Perhaps he received enough healing to muddle the medical tests but not enough to get him over the line, where he could enjoy good health, or where he began to thrive.
With medication the ‘healing information’ is transferred from molecule to molecule at the rate of one cm per second and a little bit of energy is lost with each cm.
Healing energy transfer during a healing session, occurs at around 186000 miles per second and nothing is lost in the transfer. The body’s stress response is stopped, the immune system receives a complete reset, and my clients enjoy a new lease of life.
And thousands of my clients have benefited greatly from my healing sessions. But Elijah’s body kept throwing me new curveballs.
Our extended family life seemed to revolve around his ups and downs. When he had a good day, we all felt happy and relieved. When he had a bad day, we all felt subdued. In my heart I despaired, and I wondered if there was something organically wrong with him. In the end we requested an abdominal scan to see if any of his liver/gallbladder ducts were blocked, or just to see if there were any mechanical problems with his digestion but once again nothing showed up.
By the time he went to kindergarten his knees were so badly affected by Rheumatoid Arthritis that he was unable to walk some days and certainly couldn’t partake in any physical games or races. Even a walk from school to the Purple House would tax his body so much that his fingers on his right hand would go spastic from the effort and Pete and I secretly feared that he had suffered a little bit of brain damage as well.
He had a funny habit of repeating sentences over and over and over once he started talking. We always made sure that he felt ‘heard’ by giving him verbal affirmations, but it wasn’t until we had repeated his original sentence back to him in full that he would quiet. I used to wonder what this meant, and if it was a symptom of autism, or a stressed nervous system.
The difference between Elijah and the other kids in the class was never exposed more cruel than on the day of his first athletics’ carnival. Elijah optimistically thought he stood a change, swept up by the excitement of the sound of the 100s of screaming and cheering kids and parent around him. He took off with the pack from the starting lane, throwing his heart and soul into the race. However, the reality is that Elijah could hardly walk, let alone run. After a supreme effort he fizzled out at 20 meters and collapsed on the grass. He had to be carried back by one of the teachers to where Lisanne and I were watching.
My heart snapped in half when I saw the look of mortification his face.
But this was only the beginning. Life would soon hand him another cruel blow.
In July 2014 we noticed that he began to act like a blind person. One day, I took Elijah to the toilet at a friend’s place. The smallest room in the house was new, sunny and bright. All the walls were freshly painted in white, and it was easy to see the door handle. In fact, it was impossible not to see it, unless you were blind.
Yet, Elijah did something I had never seen him do before: he palpated the walls up and down looking for the door handle. A strange sense of doom came over me, and I discussed this incident with Pete and Lisanne later in the day.
We hoped Elijah just needed glasses, but the optometrist we consulted referred Elijah to an eye specialist, whose actions would shake our family to the core.
Suddenly there was a medical diagnosis of sorts. Elijah’s optic nerves were affected by chronic inflammation. The crushing wheels of modern medicine were set in motion. He was given eye drops and prescribed methotrexate which is so toxic that we refused to administer it. He developed a chesty cough and suddenly manifested many abscesses in his mouth. 7 teeth had to be pulled and 6 filled. Why would he suddenly develop a rattly chest when his airways had always been as clear as a bell? And why did his mouth fill with abscesses? Once we realised the eye drops were highly toxic and eroding his immune system while not improving his eyes, we immediately discontinued them.
Unbeknownst to us, the eye Doc had been in touch with a Rheumatologist in Launceston, and with Lisanne’s regular GP. This GP had been as helpful as she could have been under the circumstance, but now, suddenly we were experiencing a real threat: if Lisanne refused to administer methotrexate to Elijah, there was a possibility he would be removed from her and given to a foster family on the basis of negligence.
It was one thing for Elijah to be fatigued, allergic and in pain a lot of the time, and another thing to think of our little grandson being trapped inside a world of darkness and not being able to see, or enjoy all the things we take for granted, like watching the sun come up, play games, read books, enjoy the colours of nature and so on. He would become more and more isolated. But it was quite unthinkable that if we didn’t give him this cancer medication, he could be removed from everyone who loved and adored him and plonked into a foster family that would be oblivious to his extremely strict diet, let alone being away from the centre of his universe: his mum and his twin brother. He would be dead withing a few months. .
The thought of this was unbearable. We felt crushed and infuriated and the injustice of our medical and political systems. With nowhere else to turn, we visited an alternative GP. She recommended the extreme paleo diet, and together with her, we discovered that Elijah has severe Pyrrole Disorder. This apparently is quite common. So common in fact that 10% of the population suffers from it, yet normal GP’s or paediatricians don’t test for it, because it falls outside the medical paradigm.
Pyrrole disorder can range from innocent to incredibly crippling, displaying all the symptoms Elijah had. The alternative GP gave him a cocktail of vitamins and minerals, similar to what we had already been giving him for years and suggested that we give him the methotrexate as well. I was mortified at her opinion, but I also understood the lay of the land. The alternative GP would put her licence at risk if she deviated from the standard protocol that was suggested for Elijah.
We decided to avoid the closed-minded Eye specialist from that moment on. On my insistence, the alternative GP gave us a referral to a different eye specialist to get a second opinion, but she warned us not to get our hopes up.
Elijah didn’t just have inflamed joints or eyes, he also had an enlarged heart, severe allergies and chronic anaemia, and goodness knows what else was under the surface.
We drive home from that alternative GP feeling severely depressed and challenged.
On our return I make us an herbal tea and together we wrote a plan of action.
Drugs and surgery are not an option. They only lead to more intense suffering and damage.
The good news was:
- Even the worst case of eye disease and ‘irreparable damage’ can be reversed if we find the key. We have a new eyeball every 48 hours.
- The treatments we have given Elijah since his birth have helped him to be as good as he is today. However, part of achieving healing will have to come from his diet, more specifically a diet that will heal his gut.
Elijah already had plenty of supplements that supported his gut bacteria and he has been on a gluten/dairy free diet. There was no more time to dilly dally around. We had to urgently look outside the standard GAPS and Paleo box and discover which foods were safe and wholesome for him and which to tick off the list to avoid becoming completely handicapped.
The list ended up being very short. We knew that he didn’t react to:
- Coconut oil and milk
These items were on his Safe to Eat list, which meant he can fill up on those to his hearts delight. As Murphy’s Law would have it, they were on Elijah’s lists of pet hates. Elijah loved carbohydrates and hated meats.
How were we going to get him to change?
In the meantime, we also made a list of the foods that were killing him slowly and painfully:
- Sugar and honey
- All fruits
- All nuts
- All pips
- All grains
- Quinoa and buckwheat
- Eggs (yes, even our own home grown super healthy chook eggs)
- Dairy, including good dairy like organic butter, yoghurt and even Kefir
- And of course, all processed and packaged foods.
These foods must be always avoided. That only leaves a variety of vegetables. Some veggies are safer than others. For instance, sweet potato, carrots, and beetroot are very sugary, which if eaten at a time when he is stressed could still lead to inflammation so he can only have them in moderation.
Fermented vegetables (like Love Your Guts products) are the best, because they are pre-digested and packed to the hilt with good bacteria. Fermented vegetables are a brilliant health compensation plan, better than your best private health insurance because a little bit of fermented food goes a long way.
We also gave him bone broths, which works wonders for his joints, his hair, nails, and brain due to its high collagen content. Its high calcium, magnesium and phosphorous content make it great for his bones and teeth. It improves digestion and absorption of nutrients. The fats are good for his brain and entire nervous system and there are many qualities in the bone broth that help to create a good home for the right bacteria in his gut.
Within weeks, Elijah’s eyes improved. The new eye specialist was super supportive of Lisanne, and after 6 months, even the scar tissue in his eyeballs was gone.
I wish the same could be said for the chronic inflammation in the rest of his body.
Elijah’s knees continued to grow massive lumps. Sometimes it was almost as if they appeared overnight and most days, his energy levels remained very low.
Any amount of stress would cause him to break out in hives all over his body, followed by spiking temperatures. This would happen within seconds.
In spite of the medical tests that showed he didn’t have Juvenile Arthritis, something was clearly wrong with Elijah.
Pete and I researched deeper into healing modalities, including past life issues, DNA trauma memories, and everything to do with the subconscious mind, which is in charge of our health. Whenever I gave Elijah a healing session, he would fall into a deep sleep within minutes, almost as if he was in a coma. On the one hand I was relieved that his body was getting a mini reset each time, and on the other hand, I knew that he needed more help than we could give him.
Back to the present time, March 2020
The years went by.
Every single day, I fretted about Elijah.
I knew in my heart of hearts that if we didn’t find a real solution that had a lasting effect, he wouldn’t be long for this world.
I enlisted the help of recognized healers around the world, but nobody knew Elijah better than we did.
I stopped looking for outside help, and Pete and I continued to focus on doing our own research and healing practices instead.
When the twins were 7, Lisanne found a wonderful man and together they had a little girl, Rosie.
The twins also gained a stepbrother and sister.
Elijah managed to navigate this new chapter of his life as he could, going from the focal point of his mum’s life, to now being a member of a large family.
One time I was nursing him on my lap.
He had become acutely ill while we were out for dinner and Pete had raced to the car looking for Panadol, I tried to distract him from his pain by asking about his dreams.
“I just want to have an average life, with a nice girlfriend, and a little daughter like Rosie” he said between rigors. Spiking temperatures had taken over his body in a matter of minutes.
My heart bled for him.
He had obviously had plenty of time to think it all through and come up with a modest vision for his life, one that most people would take for granted, but it was questionable to me that Elijah would ever be able to fulfil that dream.
The stress of his mystery illness took its toll on the whole family.
As time went on, life became more and more cruel to Elijah.
Many cousins came along, (we now have 15 grandchildren) and as they grew strong and big, Elijah got left behind.
Imagine watching your little cousins swim in the river, eat party food, climb trees, play basketball, run around, chase each other in the forest without a care in the world, and all you can do is sit there are watch them have fun?
Imagine not being able to eat any tasty carbohydrates ever, not even at all the Robertson family feasts, and still getting crook just from the stress of attending a celebration?
All the highlights of the year came with a heavy price of crushing headaches (we thought they were migraines, but now we know they were a form of meningitis)
All the fun times had to be paid for in pain, before, during or after the event, even when he was sticking to his diet and taking all his supplements.
Imagine watching your knees get more and more deformed, while the rest of your body isn’t growing like it should?
Imagine getting teased for your deformities?
I heard a little boy exclaim that Elijah had eaten rocks and they got stuck in his knees.
Elijah laughed, but I cringed.
I wondered how many times kids were cruel to him.
Imagine all your schoolfriends moving on to bigger and better things at High School and despite your best and bravest efforts, your body ceases up every day and you need to be picked up from school at 11 a.m. every day?
Imagine your twin brother being a head and shoulder taller and engaging in after school activities while you lie on your bed, because you so exhausted or ill?
Imagine constantly feeling miserable without a proper diagnosis?
Imagine becoming more and more isolated, feeling guilty about causing your family inconvenience, yet knowing that you have huge problems inside your body, and no adult can tell you what’s going on?
At the start of 2022, after a wonderful summer near the Forth River for all our grandkids, while Elijah suffered chronic pain, depression, and anxiety, we decided to reach out to the medical world once more.
Perhaps they had made some advances since Elijah’s previous visit to the Royal Children’s hospital in Melbourne.
Lisanne, Pete and I were worried about Elijah being misdiagnosed, or being palmed off with the wrong medication.
We had been guarding him so closely for years, but the time had come to ask for help.
The first step was a range of blood tests.
By the time Elijah’s turn came to have his blood taken he was so dehydrated from fasting that morning that the nurse couldn’t find a vein in his stick arms. (Elijah is very malnourished because it takes all his energy to stay alive.)
He had to go to different facilities to get the tests done.
He developed a fever and what we now know as meningitis from the stress, which kept him in bed the rest of the day.
When the results came in, Elijah was instructed to be hospitalised in Burnie immediately.
It felt like déjà vu.
His blood results showed that he was in a state of uncontrolled inflammation, and there was talk about giving him IV antibiotics, in case it wasn’t inflammation, but septicemia.
Lisanne had to insist that Elijah was always like this, and that antibiotics would only make him sicker.
In fact, due to the excellent care of his family, Elijah only ever had to take antibiotics once, when he had to have his baby teeth pulled.
Thankfully, the paediatric team in Burnie took good care of Elijah’s problems, and they decided against antibiotics.
After several days, they suggested that Elijah and Lisanne go to the Melbourne Children’s’ hospital.
His histology markers were so baffling, for instance it showed he had no Rheumatoid Arthritis, yet he had all the physical symptoms of joint pain and inflammation.
He urgently needed expert care.
A few days later, Elijah and Lisanne find themselves in Melbourne.
Lisanne is disappointed when she is informed that the head of Pediatrics was away, and that Elijah would be seen by her replacement.
Little did she know that she would strike gold with this Doctor.
This doctor took one look at Elijah and said: I know what this is!
Elijah suffers from Neonatal-onset multisystem inflammatory disease also called NOMID.
- It is a rare genetic periodic fever syndrome which causes uncontrolled inflammation in multiple parts of the body starting in the newborn period.
- Symptoms include skin rashes, severe arthritis, and chronic meningitis leading to neurologic damage.
- Overall, the prognosis isn’t good, though many (80%) live into adulthood.
- There are only 100 known cases in the world.
- The disease is caused by a genetic mutation. (Quoted from Wikipedia)
NOMID has only been around as a diagnosable disease since 2020, hence the misdiagnoses and conflicting information we had to deal with all his life.
Finally, we now have a name for his mystery disease.
And with the proper diagnosis, Elijah is receiving the validation and acknowledgement that he missed out on all his life.
The Pediatric team in Melbourne gave Elijah a hero’s welcome.
They complimented him on how brave and stoic he has been, enduring severe inflammation all his life, and never complaining.
They congratulated Lisanne about how healthy he was considering he was born with a serious life-threatening illness.
Lisanne received much needed healing from all the scars on her soul, feeling helpless about Elijah and not getting the medical support she needed.
All the scans and MRIs showed no brain damage (Brain damage, hearing and visual impairment is common for NOMID patients), no liver or kidney damage, and only a slight hearing deficit.
His eyes were still good.
When the orthopaedic surgeon looked at Elijah’s knees, he shook his head.
In all his 40 years of surgery, he had never seen anything like these knees.
He had to consult with the paediatrician to understand the effects of NOMID and the wonderful thing was they the entire team was willing to put their previous judgements aside and embrace new knowledge.
They complimented Lisanne on refusing the methotrexate or steroid medication because these exacerbate NOMID.
Thankfully she had listened to her instincts and stuck to her guns, even under threats of being charged with negligence.
The best news is that there is a specific medicine for NOMID.
Elijah has to learn to inject himself with this medication for the rest of his life, and this will support his body to counteract the systemic inflammation common for NOMIDs.
(The only sad news is that Elijah has a 50% chance of passing NOMID on to his children)
After 2 injections, Elijah’s skin already looked better.
After a week in Melbourne, Elijah and Lisanne returned home with a new lease of life.
Elijah hasn’t had a temperature or hives since the start of his injections.
He can eat more foods without having to pay for it in pain.
He can’t wipe the smile of his face.
As for me, I cry happy tears every day.
I can’t wait to see him run around with his cousins in a year’s time!
I love to see him enjoy himself in the kitchen, cooking up a storm.
Food has always been such a shared passion in our family, and Elijah loves cooking and eating as much as the rest of us.
Now he might be able to eat some of his own dishes and grow strong and big!
We have encouraged Elijah to open his own YouTube and TikTok channel where he can share his journey with a wider audience.
Imagine if his story could change the life of another person?
Just because there are only 100 known cases in the world, doesn’t mean that it isn’t more common.
Who knows, there could be dozens, if not hundreds of parents looking for answers, watching their child end up deaf, blind, or deformed, suffering debilitating pain the whole time.
I am so grateful and happy that Elijah got help just in the nick of time.
(Untreated NOMID patients stop growing at age 11)
Elijah will continue to receive healing session from Pete and me, and it goes without saying that he will abstain from gluten and processed foods.
His supplement intake will be closely monitored by Pete.
We want to give Elijah the best chance to a great life.
Thank you, Universe!
And, thank you for reading this email and being part of the journey.
Please share this with friends and family to raise awareness of NOMID.