Funds for luna mae- equipment and travel.

£352 of £1,000 goal

Raised by 9 people in 2 months

 Luna-mae.. 7 months old. 

My daughter luna Mae was born on the 4th September 2018.

Luna was diagnosed with Hypotonia &  hypertonia, global development delay on the 1st March 2019, age 26 weeks. At that present moment in time she was 6.5kg, 64cm long and had an below average head circumference. She also presented a poor and weak swollow.
Luna was unable to latch onto a bottle until she was 8 weeks old. At 6 months old we attempted to start weaning her which resulted to her gagging, choking and turning blue before projectile vomiting the puree. This in turn caused her to refuse bottles. She dropped from 6.54kg to 6.0kg on 25 days. Which lead at an NG tube. There are alot of referalls going around and appointments we are waiting for. 
Ultimately they believe luna has cerabul pulsey as all of her symptoms match. 
Luna is a big risk to herself especially with some of her muscle spasms. Which are often painful. Some of these happen at night which lead to her head spasming backwards, potentially blocking her airway, or causing her to choke on and inhale her own reflux. 
Luna is unable to sit, roll over, reach, grab and will even struggle with fixing and looking at objects. It's also believe that she is having absent seizures. 

We are attempting to raise money as luna now has alot of medical equipment to carry around in our car which is no longer big enough. In a few months time she will have a specialist wheelchair made for her to use too.  We have been approved for some private therapy in Nottingham which is another reason we need a new car, for the regular travel and benefits this therapy can offer luna. We will be going for a mobility car however this will no be until luna is 3, due to guidelines.
As well as a new suitable vehicle for luna. There is some equipment that will help and guide lunas development, such as the p pod supportive seat. However the NHS do not offer it due to the cost at £900.. An oxygen sensor for at night so we can keep an eye that her spasms are not putting her at risk again a couple of hundred pound and not avaliable on the NHS. Also sensory equipment, specialist clothing for once her PEG is fitted. All these companies charge a lot of money for the adaptive equipment, and clothes that will support and help with her development.
Financially we are trying to save as much as possible however I won't be able to return back to work as luna requires around the clock one to one care. The risk of her suffocating or choking is too high. As well as being attached to her feeding pump 9 hours a day, physio appointments and hospital appointments for her. Currently this month alone I have spent £50 on hospital parking as well as another £40 on tape, stickers  and creams for lunas face due to the reactions she having.
Any donation will be a massive help. Please don't feel obliged to donate. We all have our own lives and different situations to live through
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Supporting seating is so important for luna. Currently her feeds are given laid down which causes hurendous reflux and for her to be sick, however nothing supports luna. She's unable to use her core muscle for support as they are just too weak so she'll often hang, lean or fold in half when she's in a sitting position. We are currently waiting for the OT assessment, however what they can provide is ofter very basic, plastic and uncomfortable. She'll be stuck with one specific item which doesn't give her chance to move or stretch or even change position. Sit down and count how many times you move position cross your legs, arms, stretch, move her head, shoulders or arms in 10 minutes. That's something lunas unable to do, she requires me to change her position, roll her on her side or her back again. A baby her age should be able to have control of there limbs but luna often doesn't and when she does she gets very tired and they are often very uncordinated and jerky movements
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This is the p pod we are hoping to get for luna. It offers a comfy all round support where lunas cannot lean, fold in half or potentially suffocate herself. Not only does it offer the full body support, but it offers an upright position where we can try and encourage luna to use her arms more. One of lunas physio targets, is to reach & grab an object which she doesn't do at current. The NHS don't offer the p pod especially to children as they grow to quick. The p pod will also offer an upright sitting position for luna to be fed. Luna suffers from Gastro-oesophageal reflux disease. Which means the muscle at the top of her stomach is weak, meaning she's often sick or suffering with reflux. Being fed and then supported after a feed helps to prevent that acid coming back up and turning lunas throat and mouth.
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£352 of £1,000 goal

Raised by 9 people in 2 months
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Pat John Denyer-radford
1 month ago
patricia denyer-radford
2 months ago
Sean Slaney
2 months ago
Helen Thompson
2 months ago
Eloise Tate
2 months ago
Peter Peddlesden
2 months ago
Megan Hopkins
2 months ago
john denyer-radford
2 months ago
2 months ago
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