**update**

We were discharged on the 7th of May after staying 3 nights as things seam to improve but we got a phone call not even 24 hours later to bring Noah back to ED as his blood cultures have grown bacteria. Doctors re done Noah’s full bloods to confirm which showed his white blood count was so low which confirmed Noah is indeed fighting an infection. Blood cultures were taken again to see what bacterial infection he has but they’re treating Noah as if he has sepsis to get it early so his body doesn’t go into septic shock. It took serval hours to get the cannula in for the drip, with 5 different attempts and 4 attempts with a anaesthetic doctor via ultrasound. Noah is now on 2 different IV antibiotics to treat the blood infection, under going more test & now could potentially have another lengthy hospital stay.

Hey every one

It’s taken me to breaking point and I feel terrible asking for help to with financial stress that comes with the constant hospital admissions and appointments for Noah.

Noah is in hospital yet again with another ICU admission as he was febrile and nothing was bringing down his body temp from 41.

Noah can’t attended childcare as the simplest of colds puts Noah in respiratory distress, causes his temperature to rise to 41 & his heart rate above 190bpm & continuous vomiting. This is our 4th hospital admission alone for a cold this year, which they are yet to find a reason why he gets so sick. I can’t go back to work and may have to resign from my job unless Noah get approved for childcare in our home and even then I’ve been told it’s limited spaces, it’s a 4- 6 month process & the childcare cost are much more than your standard childcare.

On top of this we need to keep Noah well enough so he can have scheduled surgeries, Ear grommets for fluid in his ears dacryocystorhinostomy to open up the eye ducts to stop him getting eye infections, bronocscopy for his laryngomalacia and to also check for any structural abnormalities of his airways & undescended testicle surgery.

Bills are piling up and now struggling to keep on top of things, any small donations would help us in a big way cover food for when Im away & can’t cook for my daughters, or when the hospital can’t provide a safe meal for Noah I can buy prepackaged blended foods, medication, transportation, parking, road tolls, etc

If your in no position to help a share goes a long way

Thanks so much Xx

**We originally started Noah’s go fund me page to help him obtain equipment for his development. With your kind generosity we have been able to purchase a blender that blends family meals to a safe consistency, a supportive bath seat and a pram that provides postural support. The NDIS finally agreed to cover a standing frame & floor seat for Noah after it got media attention. Original post below:**

Our little guy has a rare nameless genetic condition that is so rare it doesn’t have a name only a genetic coding of H4C3. Noah has a micro deletion of chromosomes 6, he is 1 of 4 globally with this particular variant. Nether parent carry any genetic defects meaning Noah’s genetic mutation is de novo & no explanation can be given on how it occurred.

Noah’s cerebellum (little brain) was missing until 26 weeks gestation & is still slightly underdeveloped. The cerebellum is referred to as the little brain and plays a vital role in most physical movement, including eye movements & balance.

Problems with the cerebellum are rare and mostly involve movement and coordination difficulties as well as fatigue and other challenges

Noah was born a small 2345g full term and spent the first 18 days of his life in the special care nursery at Joan Kirner women’s & children’s hospital, as he was born not breathing initially, caught an infection which he needed an antibiotic drip for as well as low flo oxygen, nasal gastric tube for poor feeding & a humicrib to regulate body temperature.

While Noah was in the special care nursery Noah was scanned head to toe which revealed a long list of abnormalities. Shortened long-bones (humerus & femur) no nasal bone, wide set eyes, small mouth, ears, hands & feet as well as small kidneys, a thicken descending aorta & a slightly underdeveloped cerebellum which caused Noah to have hypotonia (low muscle tone) Despise all these changes he is a healthy happy little boy and that’s all we could of ask for.

We have been lucky enough to receive the NDIS to cover Noah’s therapies (speech feeding therapy, physiotherapy & occupational therapy) where he has come in leaps and bounds over the last 6 months.

Noah’s occupational therapist did a AT (assistive technology) report to have Noah’s NDIS plan reviewed as he is now 14 months and Noah would hugely benefit from equipment to help with daily life & to help him progress with his development,

however the NDIS rejected the request for equipment as they believe the items aren’t disability specific & are parent’s responsibility or that he doesn’t need those items.

Noah’s low muscle tone has hugely impacted his development from being unable to sit unsupported to requiring a nasal gastric tube for feeding as he has a delayed swallow & penetrates on fluid where it sits in his larynx making him at risk of aspiration & developing chest infections such as pneumonia. He can only safely swallow smooth puréed food with out choking which is something our blender doesn’t do.

Noah’s size at 14 months makes it so hard to get any disability specific items for him as he is still only the size of a 5 month old baby at 6.4kgs & 65cm in length. Noah’s cognitive skills are way more advanced than his gross motor skills so Noah wants to be doing age appropriate things like sitting up right in the bath, standing up to play, eating a variety of foods amongst everything else a 14 month should be doing.

With the cost of living we aren’t in a position to purchase the items Noah’s needs to help his development or improve his daily living. What ever spare money we have goes on fuel to take Noah to his regular hospital & therapy appointments, road tolls, hospital parking & monthly medication which isn’t covered by the PBS. With Noah’s complex swallow dysplasia Noah needs a specialised speech therapist that works out of a hospital. The private speech charges $255 more than the NDIS threshold of $193 per hour which leaves us out of pocket $62 every 3 weeks.

I am in no position to go back to work with all Noah’s appointments (gastro, ENT, respiratory, orthotics, speech, dietetics, occupational therapy, physio, paediatrician, neurology & has surgeries coming up). Noah also can not attend childcare at this stage as every time he contracts a common cold it puts him in hospital due to upper respiratory issues.

With your help Noah would hugely benefit from the following items & we would be forever grateful.

*Firefly Splashy Portable Bath Seat recommended by OT that retails for aprox. $1000 (including postage) to allow him to enjoy & have a play at bath time instead of laying flat screaming out of discomfort.

https://www.specialneedssolutions.com.au/product/splashy/

*Vitamix Ascent Series A3500i recommend by speech which retails for $1,299. The blender will blitz food to a safe consistency with out losing calories. The blender is also recommended for those who wish to do a blended diet for tube feeding to move away from milk formulas something that Noah’s struggled with causing him severe reflux. Noah’s been limited to eating the commercial baby food pouches that are marketed towards 4+months which leaves him limited to foods & they get quite expensive.

*A pram that has postural & trunk support to allow Noah to sit in an upright position with out head lag or flopping to the one side. We have found only the city select or the upper baby Cruz meet this criteria which retail for $1300. Our current pram doesn’t allow Noah to sit upright & is no way supportive of Noahs trunk therefore he gets tired easily, frustrated & wishes to be carried constantly.

We trailed a disability pram that the NDIS would fund with a AT report from OT A bingo mini but with Noah’s un-proportion body & shortened limbs he wasn’t supported, he was to small for the pram & we couldn’t justify asking for funding to cover the $10,000 pram.

*A custom built standing frame with a tray which we have been quoted $2500 from Noah’s physiotherapist. Noah has trialed disability related standing frames but with Noah’s shortened limbs his legs were miles away from the base on the lowest height setting. A standing frame will allow Noah to bare weight on his feet, ankles & legs, help build hip/core strength as well as allow him to play in an upright position.

*A firefly GoTo postural seat which retails for $1215. A GoTo seats will allow Noah to sit in shopping carts, swings, restaurant high chairs, dining chairs & can be used as a floor seat with the stand. A GoTo makes daily tasks easier as it offers trunk, lateral & head support.

https://www.specialneedssolutions.com.au/product/goto-seat/

When Noah out grows these items we are more than happy to forward it onto another family in-need.

We will provide regular updates on Noah’s progress, development & how you have helped benefit our little boys life!

you can follow Noah’s rare journey through life on instagram @littlenoie