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Tiri's playhouse! (Needed because of EPP Erythropoietic Protoporphyria)

Closed Cause page created in the Health category by Hayley Mcgovern for Gemma Griffiths


$16,417 donated
Given by 190 generous donors in one year
  Closed

Raising money to allow a brave little girl the chance to play like every other child. (Living with Erythropoietic Protoporphyria (EPP))

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  Waikato

Tirion (Tiri) has been recently been diagnosed with an extremely rare and potentially life-threatening blood disorder called Erythropoietic protoporphyria (EPP) of which there are only about 5,000 people worldwide. In short this means that Tiri is allergic to visible light (blue light) including sunlight, light coming through the windows and artificial light.

The condition causes Tiri to become extremely photo sensitive to light, damaging her liver, skin and potentially other organs. This means that Tiri must be fully clothed at all times including sock and gloves and light exposure must be kept to a minimum which requires Tirion to stay in doors and away from window most of the time. She is fearful of kids running in to her and rubbing her skin, but by far the worse symptom is the sensation of her skin burning, doctors describe this pain “as intense as if pouring boiling over yourself”. This burning can last for hours up to weeks with no effective pain relief available. Tirion often has a shower in school as water really is the best pain relief available.

Before this, Tiri has already had huge challenges to overcome...

She has a scar on her chest from open heart surgery, some of the kids think she is Iron Man which of course she loves. She also has a large scar on her right arm following 9 reconstruction surgeries to remove an aggressive tumor. She wears a bright pink arm brace to protect her delicate and precious arm.

Tiri wears some pretty strange looking double lens glasses because as in Tiri’s words “I can’t tell which one is my Mummy without my glasses”

We are raising money for:

• A play house and shade sale for their home

Tiri can’t play outside. One of the things that has been suggested, is that they look at getting a reasonable sized play house built, with a block out shade covering the route from the house to the play house. This would allow Tiri to have some sort of normal play, like every other child her age does, but these things are not cheap.

• Help towards medication costs, few examples below:

All windows need to be tinted (and the tint replaced every 3 years) and all light bulbs replaced with speciality bulbs

She has special cream to help protect her skin, which they are meant to apply to her whole body, but at $70 for a tiny tube, they try and save it for her face only.

• There is also some treatment, not yet available in NZ, which may become available to Tiri in a few years’ time. But it would involve trips over seas (which in itself would be a challenge for Tiri). So anything left could go towards saving for that.

(Tiri is the daughter of a friend of mine, who has give permission for this page to be created)

Hayley Mcgovern's involvement (page creator)

Friend of Tiri's mum, with Children a similar age as Tiri

Use of funds

We are raising money for (see main story for more info):

• A play house and shade sale for their home

• Help towards medication costs

• Oversea's treatment in the future


Latest donations

Phil
Phil on 20 Oct 2019
$100
Vaughan
Vaughan on 19 Oct 2019
hi , i won the dog food auction but could not transfer funds for some reason ?
$200
Rachel
Rachel on 19 Oct 2019
Thinking of you all 💕
Private
John Punch
John Punch on 17 Oct 2019
Best of Luck
$20
Farm Source Te Rapa team
Farm Source Te Rapa team on 16 Oct 2019
Hi Paul and Gemma, this is from the team at Farm Source Te Rapa office. We got together and did a raffle & BBQ to help contribute towards your beautiful Tiri's playhouse. All the very best for Friday night!!
$510

Who's involved?

Hayley Mcgovern's avatar
Created by Hayley Mcgovern
Gemma Griffiths's avatar
Paying to a verified bank account of Gemma Griffiths

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This page was created on 27 Jun 2019 and closed on 27 Jun 2020.
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