Please tell your friends – share this site! Do you know a Doctor, pediatrician, Scientist, Chemist, Neurologist? If not, people you know will. We need experts to diagnose our boy.
Please share this link and reach out to your networks. From your hairdresser to your mailman to your Facebook friends. Please forward this on to see if someone may help our baby boy. So far we haven’t found a specialist who can diagnose Maximus, but we believe someone out there will have the answer – help us find that person.
I also urge you to keep checking into Maxi’s blog – as I shall aim to post regularly on medical findings etc.
Please email any suggestions to firstname.lastname@example.org. All ideas are welcome.
Maximus is one of many children around the world who are undiagnosed and, as a result, they are prone to falling through loopholes in the system. Without a diagnosis, there is little support available. I have learned;
- Some diseases are so rare there are no tests yet invented to find them.
- If, by miracle, a diagnosis is made, should an orphan drug be required, it can be very difficult to convince a pharmaceutical company to invest in a product that is not produced for the masses.
So whatever you can do within your community to support the cause of children with rare and undiagnosed conditions can also be a pathway to answers and cures.
Send Maxi cards and well wishes
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31 thoughts on “How you can help”
When I shared your video one of my special needs friend asked have u had him tested for NF (Neurofibromatosis) I know nothing about this disorder but thought it worth mentioning.
Thanks Cheri, indeed NF and NF1 have been considered but ruled out, they are histiocytosis disorders which has many different rare forms and they are yet to rule out the possibility that it is one of the other histiocytosis illnesses. So your special needs friend is very clever, I wish you both well and thanks for sharing the story.
Medics will dismiss some of this – but have you had a really good think about chemicals within the home? Have a look at this: http://www.healthandenvironment.org/brain_cancer
There are a lot of hazardous chemicals in household cleaning products and so on, the effects of which are only now starting to be understood. Many have been banned overseas but continue to be allowed here in Australia. I hope I don’t sound trivial, but doing things like ridding the house of products like Ajax, which contain carcinogens, and switching to green products and organic food wherever possible, certainly can’t hurt – and might give his immune system a chance to recover and start to fight back. Also – do you live near any electricity towers or power sub-stations? Red Symons will tell you that his son (who was also very sick) improved once they moved away from the local power sub-station/generator they used to live near – have you chatted to him yet?
Thanks for that info, and yes i have thought of those things, and that’s why we only eat organic foods now and I only buy organic cleaning products too. People have also raised other issues like PH levels and immunisations – many environmental issues may be the cause and these are I guess very difficult to prove. I shall raise this with his doctors as well. Thanks, Yael
This is fascinating stuff, I have not chatted to Red yet but funny you mention that I have been meaning to watch the Australian Story that they did because someone recommended it. I agree that we need to think about chemicals in the home. Since Maxi has been sick and because Jacob is anaphylactic our house is free of many chemicals, we only buy organic foods now wherever possible and have tried to be as mindful of these things as possible. Anyway, i shall look further into this as well. Thanks x
I tried sending a couple of links that I thought may be worth pursuing for you but received a delivery failure after 2 attempts…double checked of course…is your gmail still viable?
Hi Haydn Thanks for the email, I just sent myself an email to check that it worked ok and it did, that email again is email@example.com Please try again and let me know how you go. Thanks Yael
Hi there, I am a Homeopath soon to be starting up in practice in Lower Templestowe. Have you thought about Homeopathy? I am also a Registered Nurse, Midwife and Maternal & Child Health Nurse.
Can you please send me your contact details to my email firstname.lastname@example.org so we can chat further about Homeopathy. Thanks Yael
Hi as a Mum that has a son with Friedreich Ataxia (Rare Disease) I feel for you both totally. It took me 2 and a half years of constant pushing and searching for an answer as to what was wrong with Jake. I actually Googled the condition before Jakes Diagnosis. My thoughts and Prayers are with you and your little man. Be Strong & Hold Faith in your hearts. Jules Lampert – York WA
Thanks for sharing Jules, your story gives me hope that it is possible to find a diagnosis through constant searching. I have come across Friedreich Ataxia disease in my research and am sorry to hear you have been through a difficult time I totally hear you when you say “pushing’ I feel that’s my whole life story now, just pushing….your story reminds me there are so many children going through this, they are unique in presentation, but it is a common problem to be undiagnosed, I feel for all the families as I know firsthand the struggles associated. Best wishes, Yael
not sure what his symptoms are the post didnt say but you might want to consider a relatively new product that is out there but the drs dont know too much about it and you dont need a doctor prescription It can be bought on the net and i can show you how to do this BUt what it does is boost Gluathione levels Gluathione is the bodys highest antioxidant that it makes go to http://www.max.com and check it out
Yael – you and Maxi are just an inspiration to so many. It was a privilege to talk with you on the phone and listen to what you are going through. I have just watched your U tube clips and listened to your radio interview. Well done! Rare Voices Australia; http://www.rarevoices.org.au is keen to do as much as we can to support you. This site has been uploaded to the RVA facebook page and will be shared via other channels including Victoria’s Genetic Support Network; GSNV. Thank you on behalf of 10% of Australian population who are living with rare diseases – a staggering 70 million across the globe! Thank you for sharing your story and hope a diagnosis can be made soon.
Hello, I read a post on FB about your son, I also read where you mentioned he had lesions come up suddenly on his brain? Are these lesions vascular? I ask because my daughter has a disease that causes lesions vascular one’s, and it is a rare disease that causes Cerebral Cavernous Malformations? Have you heard of this? They can develop suddenly and although its more common in adults children such as my daughter have this disease too. The disease can be identified by a knowledgeable, neuroradiologist thats knows what they are seeing, however many lesions can be very small and there can be lots of them and they can be mistaken for blood deposits. Three genes thus far have been identified CCM1, CCM2, and CCM3 if you’d like more info please feel free to contact me
I have a son who is 19 months old and undiagnosed. His symptoms are macrocephaly, elevated liver enzymes, mild hypotonia, and strange eye movements (we think stereotypies), and we are going to begin working with a geneticist to see if we can discover what is causing these symptoms. I will continue to follow your blog on Maxi and wish him, you, and your family all the best of luck in your search for a diagnosis. It’s definitely a journey!
Just saw the Herald-Sun piece, and the bit about salmon coloured skin lesions jumped out at me.
About five years ago, I was suddenly covered with these – and I do mean covered – it was hideous. The doctors didn’t have a clue what they were – some thought I had the measles, but tests proved negative. I had been using a couple of types of eye drops for some contact lens issues but no one thought that bore any relation to it. After about 10 days they went away.
Then a few weeks ago, I was given some penicillin for an infected tooth (something I had had heaps of times and had no issues with) and then took a neurofen to help with the pain.
Back came the lesions within a couple of hours, burning up my body – there wasn’t a single part of my body that didn’t have them. Again, it was awful – I couldn’t go out as people would literally back away from me – I looked ghastly.
This time my doctor was a bit smarter, and diagnosed severe hives and she went through my records to see what medications I had been given in the past, and looked up what was in them.
They now believe I am having some reactions to certain combinations of pharmaceuticals, with reflex/cephalexin and penicillin and neurofen all on the list. But still no one seems quite sure, and I live in dread of the hideous hives returning.
I had taken all these medications individually before, without issue. So it has made me realise that certain combinations of medication, when taken together, can have effects that science may not be aware of.
Is there an allergy to some combinations of medication that might be coming into play here?
Just a thought. And all best to you and Maxi.
do you know of this database. http://www.rarediseases.org/rare-disease-information/rare-diseases
Thanks shall look further into this.
I hope this helps, I sure hope you spend the time to watch this film about Rick and his great discovery. I wish you all the best for you your family and most of all your little man Max. Peace 🙂
Hi…I have a interesting Question and threoy. Did Maxi have “Colostrem” the DAY he was born or was he bottle fed .?..If he had colostrum how long for ?….
Hi, I immediately began to feed Maximus when he was born so therefore yes he did receive all my colostrem I continued on to breastfeed until he was 1 years old. I am very curious as to why you ask, please tell me more. Thanks
I would strongly suggest you google building biologist and your city name and have a building biologist come to your home to at least rule out environmental causes (mould, chemicals, electromagnetic fields, etc.). These are typically not obvious at all (e.g. mould usually not obviously visible) and can only be assessed by expert assessment and testing. Environmental issues affect certain individuals (e.g. those with genetic predisosition) much stronger, whereas healthy adults may be totally unaffacted. A great many mystery illnesses have an environmental cause or at least an environmental contributing factor. You can read about building biology at http://hbelc.org/ Take care.
Hi This is Nicky (MY real name is Banneheka Algama) I work as a wellness coach in Herbalife. Its a nutrition Company. Our body is amazing. If you give what the body needs, it recovers by itself. I’ll tell you my little daughters story. She is 4 & half years old. She got runny nose always and easily caught diseases very easily. After I started giving her Herbalife nutritious products she become very healthy. Now she catches deceases very rarely and even if she catch one, recovers fast without medications. And I have come across with lots of testimonials of little kids who became healthy after Herbalife. Please try Herbalife Formula 1 on little Maxi. That will give him all the nutrition he needs. I hope it will help for his good health. GET WELL SOON LITTLE SWEET MAXI 🙂
well what is sounds like is that he has blown his immune system ..If you can think back to when the first time you seen something wrong with Maxi ..And now think back a week before that time maybe he was in the car when you drove past some road works and you could smell bitumen or any think that had a bad chimerical smell. etc……When a baby is born, it is like you buying a new computer you have the hardware but no soft wear installed …. Colostrum is the soft wear for the baby, it installs every thing we need for life eg. immune system ,etc..So you mite like to try to reboot his systems..
Has neurofibromatosis been ruled out? It causes skin lesions and tumours. All the best.
NF1 ans NF2 have been ruled out, but you are right the symptoms are very close, perhaps its an unknown version of that type of disease.
Here’s something you mite like to try ,take Maxi to the Environmental center…They is one in every state , and have him tested . And they will tell you if he has been exposed to any chimerical s .Which mite give be a good place to start..
Don’t know if this will help but myself and two of my daughters have Lyme disease. We live in WA but I think I was bitten on an eastern states holiday nearly 20 years ago but I don’t remember being bitten.
I don’t know if you have considered Lyme disease as a diagnosis and whether Maxi’s symptoms are consistent with Lyme. If you consider it a possibility the Lyme disease Association of Aust could give you the names of doctors that are treating Lyme in Victoria. It is very painful and frustrating when doctors can’t find what’s wrong with your child.
I wish someone had suggested Lyme to us many years ago.
Good Luck I hope you find out what is ailing Maxi.
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