Our Miracle Man Archie

$111,050 of $500,000 goal

Raised by 1,367 people in 21 months
Our baby boy Archibald (Archie) Andrew Innes was born on the 6th January 2017 with a very rare condition called Anophthalmia causing him to be born with no eyes. From the first moment, we held him in our arms our hearts poured with love at his strength, courage and resilience. Everyone who meets Archie is instantly drawn to his gorgeous, contagious personality and beautiful smile. He is such a happy, content wee boy who people describe as having the most magical aura. His big sister Alba (3 years) absolutely adores him.

I had a healthy pregnancy up to 28 weeks when a scan picked up a possible brain abnormality. After a referral to the Foetal Maternal Unit I had a Foetal MRI scan. It was on this day our lives changed forever as we were given the news our beautiful baby was going to be born without any eyes. He is one of only a handful of children born in the Sydney region to be ‘black blind’ meaning he has no light perception at all.As you can imagine the last few weeks of my pregnancy we filled with anxiety trying to work out how we cope raising a blind baby. However, this was to be just the start of our worries as the extent of Archie’s health problems began to be revealed.Shortly after Archie’s birth the genetics team diagnosed Archie with Sox2 Syndrome which affects 1:250000 births. His specific mutation is so rare there is only one other recorded case in the world. It was at this point we knew our miracle man was incredibly strong to already have survived so much just to be with us.

Archie’s future prognosis is unknown and the journey since birth has understandably taken its toll on us as a family as complications associated with his syndrome have developed over time:-
- At four weeks Archie was diagnosed with a neurosensory mild/moderate hearing loss requiring him to wear hearing aids.
- Between 2-5 months Archie was admitted to hospital on 6 separate admissions with respiratory infections requiring high flow oxygen.
- At two months Archie was placed on a Nasal Gastric tube to feed. He remains on an NG tube as he has mild/ moderate silent aspiration and has developed an oral aversion.
- At four months Archie had a MRI scan to investigate the structure of his inner ears to find out if he may go deaf. Thankfully the results showed Archie has a non-progressive hearing loss. However the scan also indicated that Archie had several brain abnormalities likely to affect his development.
- At nine months Archie was admitted into hospital with another respiratory infection.
- Archie has a severe motor delay and is still struggling to lift his head up.

Archie has support from a huge multidisciplinary medical and therapeutic team consisting of:
- Paediatricians
- Eye specialists: Ophthalmologist /Ocularist, Oculoplastic Surgeon
- Hearing Australia: Audiologist
- Genetics Team
- Speech therapists/Feeding Clinic
- Respiratory Specialist
- RIDBC: Royal Institute of Deaf and Blind: Occupational Therapy
- Vision Australia: Occupational Therapy, Physiotherapy, Speech Therapy
- Guide Dogs: Mobility Training
- Cerebral Palsy Alliance: Physiotherapy, Speech Therapy , Hydrotherapy

As you can imagine with each new day comes a new battle, a new challenge to find the energy, courage and strength to organise, facilitate and manage the amount of care Archie requires and desperately needs.My days are filled with numerous medical appointments and therapy. It’s hard to prioritise all appointments he needs as well as finding time to just be a family together. It’s so overwhelming, it feels like there are just simply not enough hours in the day!

Currently we are waiting for dates for three potential surgeries:
1) Grommets in both ears for a bilateral fluid build-up behind the ears
2) Getting a g-tube inserted into Archie’s tummy for feeding
3) Eye surgery: placing a hydrogel in the smaller eye to expand orbit to for prosthetic.

Making the decision to ask for financial support has been a difficult and uncomfortable decision for Stevie and myself. No one expects to find themselves in this situation when they start to prepare for the birth of their new baby. However, the reality of the situation is that unfortunately due to Archie’s complex medical needs and numerous therapies I am unable to return to full-time work. We are barely surviving on one income and are steady going into debt.We are struggling to pay Alba’s child care fees and with no family support during Archie’s regular admissions into hospital Stevie has had to also take lots of time off work to attend important medical appointments and stay in hospital during admissions, his employer has been incredibly supportive however there are limits to what help they can give.

We feel extremely lucky to live in Australia where we have received such incredible health care and support from our community and many loving friends. However, it isn’t enough on its own and Archie’s health and therapy takes priority over our reluctance to ask for your support.We really want to provide him with as much early intervention as possible to give his brain the chance to develop to the best of its ability and to learn new pathways. This requires him to have regular very specialised therapy associated to his visual impairment. It is likely to take many months/years for Archie to reach his full potential and with each milestone will be a massive celebration. We really want to give our little boy the best opportunity to become independent and reach his full potential.

It is extremely overwhelming thinking of a goal to aim for as we simply don’t know the level of care Archie will need over the years but absolutely anything would make a massive difference. If you are willing to help our family through this difficult time we would be more grateful than words could possibly express.

We want to be completely transparent and these are how the funds would be used:
- Private health cover for Archie
- Additional intensive therapy, physiotherapy, speech therapy, music therapy, hydrotherapy above what NDIS funding provides.- Medical and specialist physical equipment (medication, gtube equipment, specialist food, specialist standing frame, corner chair, specialist walker).
- Specialised sensory toys to encourage and stimulate Archie to move to become curious about the world which surrounds him.
- Assisted technology to assist with Archie’s visual and hearing impairment.
- Attend the ICAN conference in America in July 2019. This will give us the opportunity to meet the geneticist who discovered Archie’s syndrome. Talk to the top eye specialists about advances in medicine and technology which may help Archie gain some vision in the future and help with future eye surgeries.
- Contribute to petrol costs and car parking fee for the numerous hospital appointments.

For anyone unable to contribute financially there are many others ways to help families in similar situations:
- Have a cake stall and donate any money raised to the Guide Dogs, Vision Australia or RIDBC.
- Register with the app “Be my eyes” on your mobile phone. This provides support for a visually impaired person to call a sighted person to ask for support. They use the camera on their phone like their eyes.
- Make a meal for a family you know who might be struggling.- Send a text, buy a coffee, give a hug, have a conversation, visit a friend in hospital. It’s these small acts of kindness in the most difficult times are always remembered and appreciated.

With any additional funds raised I would like to pay it forward in the following ways:
- Set up an advocacy service at all the foetal maternity units/maternity units across Australia so any parents who have give birth to a child with visual impairment know where to access specialist support immediately.
- Provide training and strategies for nurses/paediatricians about how to communicate with babies and children with a visual impairment.
- Provide hospitals with a bag of specialist sensory toys/an iPad with suitable games for the visually impaired.

I have learnt more in the last nine months from my miracle man than I have in my lifetime. I now live each day to fullest and appreciate everything. I have learnt to live in the present and am trying to focus living day to day as you never know what is around the corner. One thing we know for sure is that Archie in his short nine months has already changed the lives of all the people who surround him. If you would like to follow Archie’s fabulous progress we have a dedicated Facebook page called Archie’s Incredible Journey. Thanks for taking your time to read about our miracle man. We appreciate all your support and thank you in advance for any help at all you feel able to give. They say it takes a village to bring up a child and for Archie this is most definitely true.

Please help spread the word!
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It is here as I sit in Accident and emergency with Archie that I reflect on my miracle man turning 19 months! What a crazy few months we have had! I kept meaning to write an update but I seem to keep catching my tail!

Firstly I would like to thank all the lastest fabby people who have donated . Your support is soo greatly appreciated and life changing for Archie.
Secondly I would like to apologise for not posting any updates for the last few months. Archie’s life is soo fast paced with many, many things happening all the time I find it hard to keep up!
Archie has been sick with on and off with respiratory infections, ear infections and eye infections over the last few months. He has had six separate hospital admissions and to be honest I can’t remember the last time he was actually 100%. This has had a huge impact on his therapy and beginning any routine based learning at home which has caused much frustration.
However we have begun his nutritional programme and he gets daily high grade vitamin c, mineral, fish oil and probiotics. Hopefully this is boosting his immune system!

There is always a silver lining, whilst Archie has been sick it has given me the opportunity to complete Archie NDIS paper work (funding for therapy), make a housing application and apply for in home child care.

Each of these applications are extremely time consuming and require dedication and a ton of motivation to complete! The government does not make it easy! The amount of laising and coordinating with specialists for evidence is incredible all whilst looking after my miracle man! To say I was exhausted by the evening is an understatement! I would not wish this process on anyone!

All this paperwork has been emotionally draining as I have been forced to focus on the severity of Archies disability and complex medical background. This is something I have never needed to do before!
Thankfully I can report that most of the paperwork is now complete and we have had some fantastic outcomes I would like to share.

We have just moved into three bedroom house with support from the government This has given more space to do Archie’s therapy.
I have been given some funding for a support worker to help implement Archies intensive therapy and routine based learning at home. We are using donated money to help fund our amazing support worker.

We are still awaiting news of Archies NDIS funding but unfortunately I have already been told his therapy will drop to half of what he is already receiving!

Archie has started at Bear Cottage a wonderful children’s respite/ hospice to complex children.

Archie has received a standing frame :)

Archie has started NAPA - neurological Physio.
There are only three NAPA centres in the world.
We have started weekly sessions focusing on CME therapy. This has been an amazing therapy for Archie, it has given me so much hope that one day he will be able to move independently. Much of the donated money is going towards this therapy and we are hoping to do some intensives next year which are extremely expensive but soo worthwhile. I intend to post more videos in the future.

Archie’s has had two eye operations! He has had a hydrogel fitted in his left eye to help stretch the eye. This unfortunately failed in the first instance as was too large. He has now had a second smaller hydrogel inserted. We are just waiting to see if it has been successful!

Moving forward I now have the support in place for the exciting magic to begin! I can begin implementing parts of what I learn through the Institute of Human Potential and my time in Tokyo. My focus will be on the sensory programme and mobility programme. We now have to pray that Archie stays healthy for a substantial amount of time.

I have just started an instragram account called Archies incredible journey of you would like to follow his progress more closely.

Please continue to share Archies gofundme Page with all your friends, family and work colleagues. We are hoping to do some fundraising events in the near future.

Thanks again for your ongoing support no words can describe how grateful we are for all your donation

I apologise again for not keeping you all up to date with Archies progress as it is happening and will endeavour to in the future.
Mummy cuddles are the best!
Recovering from eye surgery!
Alba gives Archie the best cuddles
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I just want to begin by saying a huge, massive, thank you to everyone who has donated recently and the continued support for our Miracle Man.

I am recently back from Tokyo where I learnt what could be life changing for our miracle man. This is thanks to all of you and for this we are eternally grateful.

The course I intended was run by the Institute of Human Potential" They are located in Philadelphia in the US. The course was called “What To Do About Your Brain-Injured Child Course" which is specifically run for parents. The course consists of 5 intensive, full days of lectures where you learn about Child brain development.

The course is for parents who have a child with a brain injury, this could be caused from an accident, during child birth (lack of oxygen) or through a chromosome/genetic issue (this applies to Archie)
The Institute have spent over 70 years researching child development and its impact on brain injuried children. They have the largest records and results in the world.

In modern medicine today we treat a child's symptoms we never look at where it originates - in the brain! This is very true of Archie we treat his symptoms but never his brain injury/abnormality. This is why the Institute of Human Potential is soo very special. They believe the brain grows by use and that function builds structure in the brain. It grows by frequency, duration and intensity.

How do they do this? They have designed their on developmental profile. It is leveled according to how the brain develops from birth. Babies/childrens brain develops/learn through Visual competence (seeing), auditory competence (hearing), tactile competence (touch). This provides the nervous system with a sensory pathway which leads up into the brain. This then provides a motor pathway coming out of he brain which develops a babies mobility, language and manual competence.

How do parents help their babies brain to develop- well the institute has come up with four different programmes
1) Physiological/nutrition programme
2) Physical programme
3) Sensory programme
4) Intellectual programme

Over the five days I learnt how to assess your Archie’s neurological age through using their developmental profile. Each competence has a box which can mark as functional or perfect. You have to get perfect consistently to move up a level. Each level for the visual, auditory and tactile competence has a range of activities and experiences to help your child develop. These experiences and activities make up an individualised home programme where you preform these activities/experiences through frequency, duration, intensity- this helps the brain to grow!

By the end of the course I had my own home programme ready to implement for Archie Its incredible and completely life

Moving forward The Institute offers further support in numerous ways through an intensive treatment programme (where they meet your child) and further lectures to learn in more detail. These we may consider in the future.

I hope you can understand all what I have written I think its brilliant!

We are beginning to implement the programme slowly. To begin with we are sorting Archies sleep routine and implementing his nutrition programme.

I plan to start implementing the sensory programme next month :)

I really look forward to sharing this exciting journey with you.

There will be more updates to follow shortly

Much love
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It is with great excitement that I tell you about a fabby opportunity for Archie and the family. In a couple of weeks I am attending a course in Tokyo called ‘What to do with your brain injuried child run by the Institute of Human Potential. They are based on America.

I have just received confirmation that I have a place on the course :). The course provides parents with the vital information on how to significantly increase your child’s mobility, intelligence and social growth and improve health and physical growth.

I will learn in detail over 5 intensive days all about the structure of the brain and it’s function. From this information I will learn how to provide an ideal environment for Archies brain to grow based around his brain abnormalities

I am beyond excited about this opportunity and thank you for all your support and donations to make this become a reality. Without all of you I would not be able to go.

You will see that we have increased our target now to $500,000. This is so we can continue to receive vital support for the Institute of Human Potential over the coming years and hopefully take Archie every six months to year to be reviewed by the specialists in Tokyo through their intensive therapy programme.

I will keep you all posted on Archies progress!

Please, please, please continue to share our incredible story.

Much love and thanks xxxxx
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Happy 1st birthday to my Miracle man! What an incredible year it has been! This time last year you entered the world and our incredible journey began! Everyday has been an adventure never knowing where we are going to end up! Archie has taught me the true meaning of living in the here and now.
Reflecting on his first year we have had:
7 admissions into hospital for respiratory infections
1 admission for Norovirus
2 surgeries totaling around 46 nights in hospital.

Number of Medical appointments
Genetics team: 3
Ocularist: 9
Eye specialist: 5
Hearing Australia: 12
Doctors: 12
Feeding clinic: 3
Cardiology: 1
MRI scans: 2
Respiratory specialist: 1
Swallow study: 1
Feeding Clinic: 3

Number of therapy appointments
Occupational therapy with Vision Australia: 16
Guide Dogs (mobility specialists): 11
RIDBC (Royal institute for Deaf and blind): 11
Speech therapy: 8
Physio: 24

Despite all this craziness! I wouldn’t change a thing...I have met some fantastic people along the way. I wonder what this year has in store?

Archie thank you soo much for coming into my life. I feel truely blessed! You have my heart now, always and forever xxxxxxxxxx
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$111,050 of $500,000 goal

Raised by 1,367 people in 21 months
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