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Written by Marion, a good friend of the Funk family and the charity’s manager in the absence of the two boys’ mother – Melanie.
I just wanted to drop a line to let you all know the latest news with our two brave little local boys Matthew and Harry, and their amazing mother, Melanie.
For those of you who cannot follow our progress on Facebook, the following is where things are at presently. The family is currently in France attending the 2nd of three treatment trips to Avene, thanks to the kindness and generosity of every one of you. They have been doing generally well since last year’s first treatment, but with flare ups and outbreaks occurring every now and then. The following is an update I’ve recently made to our history to help keep you in the loop.
However, firstly, I suppose our most exciting recent news is that we are extremely grateful and incredibly humbled to have been chosen as the charity of choice by local Gold Coast couple Ayden and Jess, who are participating in Channel 9’s RENO RUMBLE. They have made it to the Grand Final which is on TV next Sunday and Monday night, so we are very excited for them – GO THE REDS! Whatever the outcome, their generosity will provide much welcome and needed funding for the boys needs including next year’s treatment and a funding towards a small building project which is necessary due to home-schooling requirements. (You can read more about the ongoing fundraising needs, below in our update). We hope you will all spread this news on social media and watch the show to cheer this wonderful couple on with us!
I thought it was time to update our story as the boys were only 4 when we started this quest to get them relief and they are now 6 years old! The original information which you’ve all received previously forms the solid foundation for the reasons this campaign started, however, the following are just some things I’d like to say about why we need to continue, and what the boys situation is today….
HARRY & MATTHEW TODAY
These two young boys are probably the most social, funny, entertaining boys who just ooze personality, that I’ve ever had the pleasure of knowing. They are very confident and balanced children, despite the fact that they have been burdened with such debilitating conditions, which affect their everyday lives. This is very much due to the fact that they have a most amazing mother – Melanie, who has worked tirelessly all their little lives to ensure they feel as ‘normal’ as possible, whilst still being keenly aware of their ‘uniqueness’!
After last year’s first trip to Avene, the boys skin conditions changed drastically. Remember, Avene is not a cure but is way of improving and strengthening their skin so that it can battle the constant flare ups and allergic reactions, which leave it prone to bleeding and tearing – as well as the ever-present itching! Their year has been a total about-turn compared to how they were previously, so we now need to continue with the two follow up recommended treatments at Avene, to further strengthen their resilience. Last year, upon return, they kept asking me to feel their silky tummies – it was incredible, they were so happy!
Earlier in 2015, the excitement was at sky high levels as Harry and Matthew prepared to go to school. This was to be the culmination of much preparation on behalf of Melanie, both from a health aspect and with taking preventative measures to ensure the school was completely aware of the DEADLY consequences of the boys being exposed to allergens. (REMINDER HERE – the boys do not only suffer from severe eczema and psoriasis, but also have severe food allergies and depend on prescription formula for 99% of their ‘food’ intake). Long story short, despite the best efforts by school with the resources available to them, they boys had to leave due to constant breakouts and allergic reactions for various reasons. This now means they have to be home-schooled. Not only was this a massive emotional roller coaster for Melanie, but Harry and Matthew had to make yet another adjustment to their lives because of their conditions.
In summary, Harry and Matthew have particularly fragile skin and a problem with severe food allergies. They are constantly in the risk zone of anaphylaxis due to inadvertent ingestion of problem foods. Their skin conditions require treatment many times a day to protect the skin. They both suffer from gastrointestinal symptoms and need to attend regular medical appointments. Each and every place they visit can influence their well-being. Just one major exposure to dust mite or being in the wind or overheating, on one occasion, for just a few minutes, at a random place, can trigger a reaction that can last a week or more. They simply can’t be treated as ‘normal kids’ from a medical aspect.
WHY WE NEED TO CONTINUE:
Firstly, a personal note from me regarding Melanie. She is the most amazing woman I know, having spent the first 4 years battling such trying and significant multiple health problems that the boys had. Their complex special needs require much diligence and dedication. She truly has DOUBLE-TROUBLE and is a single mum. Her mother Anne, who is a registered nurse, has had to move in with Melanie and provides invaluable support to her and the boys. Initially, it was very difficult for Melanie to accept help from others, believing there are always others who are more deserving than her. However, at the time she was barely coping and something had to be done. She is still a very humble person when it comes to accepting help, not realizing the extent of her own situation and the long term requirements both financially and emotionally, because she has just invested so much of herself into the boys. Her heart is always full of gratitude. So, we need to continue to fundraise for the her and the family, for the following reasons:-
Avene – Three treatments are recommended to give the boys the protection and resilience they need on their skins, to better battle flare ups and reactions. Their medical specialist has stated that their conditions will likely continue to have life-long allergies and need much care and attention.
Medication – as the boys have developed more allergens, there are ongoing financial costs for their daily treatments. In addition to this there are the daily costs of formula and other meds from time to time, depending on their situation. On good days, Melanie spends about $250-300/mth, but when there are reactions; costs can escalate to around $800/mth.
Ongoing – there are many non-obvious costs and these are hard to put a figure on as they tend to fluctuate. These include things such as special clothing and dressmaking costs for the boys, particularly nightwear so they don’t rip their skin off when itching, gloves, air-conditioning on daily to avoid overheating, non-pbs medication, air purifying equipment, special bedding, specialist fees, etc., etc. I would also like to highlight that ‘allergy families’ each have their own financial and emotional hurdles. Some chose different products/treatment/systems that work for them (or don't work but they feel they need to try everything) and all cost various amounts; so it is hard to put a final figure on the cost of allergies and atopic dermatitis.)
Schooling – Melanie desperately needs to adjust her very tiny home, with two growing boys who now require homeschooling. She needs to add on a small ‘classroom’ to accommodate them. As a family, who due to their conditions and this new adjustment, spend so much time ‘in their bubble’, it is an absolute necessity at the moment for her to have some extra space for the boys and their needs. So the funding continues…
I hope this helps to put you all in the picture about how the family are doing and helps to create a better understanding in the community about the consequences of living with such conditions for families, and there are many who suffer. It is a HUGE roller coaster ride for so many families, with physical, emotional and financial implications and burdens to bear. We are grateful for your support and continued encouragement, which is paramount to achieving relief for the family.
About Harry and Matthew:
Six year olds Harry and Matthew have suffered their whole lives with severe skin and food allergies, greatly limiting their ability to enjoy experiences most kids take for granted. Mum Melanie takes the boys regularly to see a Paediatric Allergy specialist, as they have been diagnosed with multiple allergies, to a point where they are unable to tolerate most foods, grasses, pollens and dust mites. They receive 99% of their nutritional needs through prescription formula, have an EpiPen with them at all times and require around the clock, high level care. Harry and Matthew require constant monitoring to reduce the scratch-infection cycle as well as extensive medication (steroid ointments/oral liquid, antihistamines, antibiotics, emollient creams, antibacterial creams, etc.). They also require regular wound dressings and specialized eczema protective clothing. They are on an extremely restricted diet and rely on prescription formula for their daily nutrition. Their specialist is constantly amazed that these boys are not often in hospital due to the severity of their allergies/skin conditions. As you can imagine, the costs associated with their care are quite high. Melanie spends large amounts every week on eczema clothing, creams, bandages, dressings and medications.
You can learn more about Harry and Matthew here: https://www.facebook.com/pages/Two-Little-Boys-To-Avene/187253521465758
You can learn more about Avene here: http://www.avene.com.au
Ayden and Jess’ Reno Rumble Quest
Ayden and Jess, who are currently competing on the hugely popular TV show, Reno Rumble, have announced that Two Little Boys to Avene is their charity of choice. Should the couple win at Monday night’s finale, Two Little Boys to Avene will receive $50,000, while if they come second they will receive $25,000.
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