Bradley Ayling's Myasthenia Gravis Page Is a Story About My Son.
He was diagnosed with Myasthenia Gravis. In October 2006, he was only 6 years old. One day I picked up Bradley from school and noticed he had droopy eyes, in fact, he had to tilt his head back to be able to look for me in the crowd. I took him home and made an appointment to see the doctor the next morning. That wasn't the first time I noticed his eyes, he had been like that all week, but that day was just worse.
I believed it was just something to do with his hay fever, or maybe he was tired.
But that day I knew it was something more serious.
The doctor took a look at him, after some time he was just looking at him and thinking, he told me he had to make a phone call and asked me to wait outside.
I knew there was something really wrong!
After about 15 minutes he came out with a letter and asked me to take Bradley to the Local Hospital and give Bradley's name and the letter to the doctor.
From that moment on, our life became a nightmare.
Myasthenia Gravis Symptoms
Bradley's symptoms were getting stong and he lost his smile
Watching countless doctors next to him, doing various tests was the scariest time of my life.
His face was changing so fast, he could no longer smile, and he was worn-out and terrified of more needles.
I felt hopeless as I couldn't do anything to help him.
They told me that there was a chance he had a condition I had never heard of Myasthenia Gravis, but it could also be a brain tumour.
To be sure there were some tests he had to do, so they were transferring him to St Thomas' Hospital in London the following morning.
Bradley no longer looked like a healthy child, his neck was weak, his mouth was droopy his eyes were getting worse.
He didn't have the strength in his lips to suck a drink through a straw without dribbling down his shirt.
Myasthenia Gravis Symptoms
- trouble talking
- problems walking up stairs or lifting objects
- facial paralysis
- difficulty breathing due to muscle weakness
- difficulty swallowing or chewing
- fatigue
- hoarse voice
- drooping of eyelids
- double vision
He had a nurse watching him eat just in case he choked on his food as swallowing was difficult for him with myasthenia gravis symptoms.
I just wanted to take him away from all that, I wanted my life to be normal again, I wanted to go home and have a good nights sleep.
I just wanted to wake up from this bad dream.
We arrived at Evelina Children's Hospital, Department of Pediatric Neurology, St. Thomas' Hospital.
They were all ready for Bradley, and doctors started tests right away.
Students from the university were approaching to ask consent to take a look at Bradley and spot the symptoms.
I was aware it was a rare disease in children, and they had the opportunity to study the symptoms with Bradley.
After the tests the doctor came to see me, he told me he believed Bradley was suffering from Myasthenia Gravis and there was a test they needed to do.
But that test was done in a different hospital, and they couldn't do it until the following week.
The problem was that Bradley's MG symptoms were getting worse too fast and if they couldn't give him the right medication there was a chance of a myasthenic crisis; a remote chance but they didn't want to take that risk.
Myasthenic Crisis
A myasthenic crisis happens when the muscles that control breathing weaken to the point where breathing becomes almost impossible. In such cases - if the patient is lucky enough to be in hospital - a ventilator machine has to be used. Therefore they recommended doing a placebo/Tensilon test.
The Tensilon Test
Tensilon is the trade title for edrophonium chloride. The Tensilon test is an injection of edrophonium chloride used to diagnose myasthenia gravis.
I was told they were going to get a room ready with a video camera so they could film the all test just to be 100% positive of the result. In the
room, there were going to be several doctors. They would give Bradley three injections; only one syringe would be the Tensilon and only the doctor administering the injections would know which one it was. All the other doctors and I would have to check if Bradley's symptoms - specifically
his droopy eyes - got better after each injection was given. Bradley cried all the way through the procedure, sometimes his words still echo in my ears, "Mummy help me, Mummy stop them, don't let them hurt me any more, oh God help me please!" Of course, I was crying too, I had to hold him tight while they did all the tests. But after injection number three I was so happy: all of a sudden I could see my son's eyes like they used to be. The doctors and I all shouted the same words at the same time: "it's number three!" While I realised that he had a serious long-term condition, I was so relieved that he didn't have a brain tumour. At the time I didn't really know what Myasthenia Gravis was anyway.
Bradley still had the other test, (intramuscular) EMG, the following week and was diagnosed positive for myasthenia gravis.
The Hallmark of Myasthenia Gravis Is Fatigability
Muscles become progressively weaker during periods of activity and improve after periods of rest. Muscles that control our eye and eyelid movement, facial expression, chewing, talking, and swallowing are especially susceptible. The muscles that control our breathing, neck and limb movements can also be affected.
But at least he was taking the right medication to help him during the wait. He was given pyridostigmine, and that drug can improve muscle function by slowing the natural enzyme cholinesterase that degrades acetylcholine in the motor endplate. The neurotransmitter is therefore around longer to stimulate its receptor. The problem is Pyridostigmine is a short-lived drug with a half-life of about 4 hours.
With The Best Help From Dr Heinz Jungbluth
Dr Heinz Jungbluth, a Consultant and Senior Lecturer in Pediatric Neurology, he has been working at Evelina in London since 2004 and he was Bradley's doctor. He was the greatest I have ever seen, and today I work with some fantastic specialist consultants in a Hospital I work even with Professors myself, so, therefore, I know when to spot a fantastic specialist.
Dr Heinz Jungbluth Came to Believe That There Was a Possibility That There Was a Tumour in Bradley's Thymus Gland: A Possible Cause of the Myasthenia Gravis.
After the initial MRI scan was done, one of the specialists could see what he thought was a tumour. A CD containing the results was sent to some other experts at another hospital to see if they could verify this conclusion. After the scan, there was still no consensus amongst the specialists one way or the other, but Bradley wasn't doing too well on his medication: it was wearing off too fast. Dr Jungbluth talked to me and said that he wanted to do a thymectomy as he believed it would help Bradley to have a better quality of life. Even if there was no tumour, Bradley would have to have the operation sooner or later as the malfunction of the thymus gland is one of the major causes of this condition. It would be more suitable for him to have the operation while he was young and better able to make a speedy recovery.
By Now I'd Had Time To Read All The Information I Was Given By The Doctors And Nurses Regarding Myasthenia Gravis.
I learned that Myasthenia Gravis was a condition where muscles become quickly tired and limited. It is caused due to a problem with how the nerves stimulate the muscles to contract. The muscles around the eyes are usually affected first. This generates drooping of the eyelid and double vision. People with myasthenia gravis have a deficiency in the way nerve messages are passed from the nerves to the muscles.
Myasthenia gravis is an 'autoimmune disorder'. This means that the immune system (which usually protects the body from infections) mistakenly attacks itself. Myasthenia gravis can occur in all ages but affects mostly women under 40 and men over 60. It affects roughly 1 in 20,000 people. And women are three times more likely than men to have the condition.
Bradley Was Allowed To Go Home Until The Thymectomy
Bradley Ayling's Myasthenia Gravis Information
But Bradley was doing well on his medication, and after a few days, they told us we could take him home until the operation was booked. It felt so good to get back home and have the family together again. It felt like we had been away from home for a long time. I was a bit scared about having Bradley at home: it was a big responsibility making sure he had his medication every three hours, looking out for the symptoms regularly in case the drug wasn't effective for all the time between doses. Sometimes, if he had too much excitement, the symptoms would come back before he was due to have more medication so I had to make sure he would go to bed to sleep, not even to watch TV in bed. Sleep was the only way to fight the symptoms. He was also allowed to go back to school. At the time Bradley was going to Temple Hill School in Dartford. Going back to school meant more worries as I feared his symptoms may not be spotted. Bradley's nurse Debbie Clark went to his school to educate his teachers and all the school staff about this illness as they all had to watch out for the symptoms. She was a good nurse and gave us lots of support and information. After that, I had to drive to school to provide Bradley with his medication on time as he needed it every three hours and the school policy didn't authorise the staff to administer it until they fully understood his illness.
All worked out well in the end: Bradley's school was also great at dealing with this. They keep their eyes on Bradley's eyes, and if they noticed any droopiness, they would put him in a room to rest or sometimes call me to pick him up. This meant Bradley wasn't allowed to do PE or even go outside at playtime; he couldn't do anything physical at all. It was very frustrating for him as he couldn't understand the reason why he wasn't allowed to go out and play with the other children. He had to stay in the school library while the other children played happily outside. But his teacher, Miss Donovan, was so good, she asked a different classmate each day to stay with Bradley just so he wouldn't feel so lonely. That was nice of her to give him and us so much support. So until the operation Bradley still had a bit of life, going to school meant so much to him as he loves school.
More About Bradley Ayling's Mayasthenis Gravis & Information
Dealing with Bradley's condition only six weeks after having a baby made it all the more difficult. I wanted to be with Bradley, but I also felt the need to be with my new baby.
The hospital was incredible: they understood the situation and let me have the baby with me all day long. I remember one night; my husband took the baby home as I wanted to spend the night with Bradley.
About 3 hours later I was crying on the phone, I felt so empty I needed to be with the baby as much as I needed to stay with Bradley. It was very late, but my husband drove all the way back to the hospital so that I could spend a few moments with our new baby. It was quiet at the hospital at that time of night, so I asked the male nurse in charge if it was OK to let my husband and the baby come in just for a little while. As he looked at me I had tears in my eyes, and he said, "It's not easy for you having such a small baby and dealing with Bradley's myasthenia gravis too. I can do better than that. Room 33 has a cot, and it's empty. Why don't you spend the night there with the baby and your husband can stay with Bradley? That way you can check on Bradley anytime you want." I can't even describe what that meant to me that night. For some reason, I really needed to be with both of my children that night. I'll never forget that nurse: he knew I appreciated what he'd said, but he didn't realise how much it meant to me. And even better the next day, since the cot next to Bradley's bed was empty he told me to put the baby in it just so I could sleep between both of my children. I'll never forget that! The doctors and nurses at that hospital genuinely care about the patients but they also care about the families who are suffering.
Back At The Hospital
The Day of the Thymectomy
Bradley was so happy to have us all there with him, but we didn't have the heart to tell him what he was there for.
The advice we were given was to tell Bradley the truth!
Fair enough, we had to tell him what was going to happen to him, his smile just vanished, and he was so frightened, but we managed to make it sound like a straightforward procedure instead of a big operation.
This picture was taken after we had told him about the operation. I told him he had a butterfly on his chest that needed to come out, and that was the reason why he was so sick. I said that because the thymus gland is almost in the shape of a butterfly.
The Thymectomy!
It felt like a lifetime waiting for Bradley's Thymectomy to finish. The surgery takes about 3 hours, too long to remain calm.
Thymectomy is a Surgery Where They Remove the Thymus Gland
It usually results in remission with the help of medication. However, the remission may not be permanent. A thymectomy is usually carried out in an adult. This is because the thymus loses most of its functional capacity after adolescence, but does retain a small portion of its function during adulthood.
The Thymus Gland Is found in the Upper Chest under the Breastbone.
It is composed of many small lobes and is shaped somewhat like a butterfly wing over the windpipe. Hormones produced by the thymus gland are thought to affect the immune system and the neuromuscular transmission although the exact role in Myasthenia Gravis is not completely understood.
Let me tell you, all went well and I thank the universe and Dr Heinz Jungbluth, and all the gifted people that work at that Hospital. Everyone contributed to Bradley's fantastic recovery.
Time to Go Home
The picture with the balloon is Bradley finally leaving the Hospital!
Why I Created A Page About Bradley Ayling's Myasthenia Gravis-Information?
I remember looking for something on the internet to give me hope. All I could find at the time was information that I already had. I looked for hope, I wanted to find someone who actually dealt with Myasthenia Gravis on a day to day basis and turned out fine. We knew that even if the operation were successful, we'd be living with this for the rest of Bradley's life. I found plenty of medical essays, but I couldn't find that hope on the internet at the time, so I just had to believe and trust the doctors. I created the page Bradley Ayling's Myasthenia Gravis-Information just so someone in the same position as me back then can think and feel hope living with this rare condition.
Bradley is living a healthy life, and his remission may not be permanent, but so far he is just like any other child. No medication and no restricted playtime, the only thing that reminds us of all this nightmare is the scar in his chest. I hope this story can help you!
Bradley's Life Since The Thymectomy
He was so proud of that scar 🙂
Here I have some pictures of Bradley now.
I'm so happy to say that Bradley has a totally healthy life after myasthenia-gravis!
It's now October 2019 Bradley is 19 years old, and he is still in remission!
To most readers, this is just another article,
but I know that to someone else who has
little faith like I did back then,
this article could be HOPE.
Thank you for reading!
Comment down below if you have questions or simply to say hello. 😉
