Family Seeks Port Stephens Community Support for Maddy

Maddy in happier times.
Maddy in happier times.


MADDY is in need of help from our community.

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Maddy has bardet biedl syndrome (bbs1) which is a rare genetic condition on chromosome 11 as well as other unusual chromosome abnormalities.

Unfortunately Maddy’s losing her vision fast due to retinitis pigmentosa and she has other eye conditions including astigmatism, nystagmus, and exotropia.

Maddy’s mother Mel Budworth told News Of The Area, “Maddy is also fast losing her strength, her muscles are twitching so they have put her on an anti-epileptic drugs to help.”

The doctors are not sure what is causing all of Maddy’s conditions.

“She also has hypermobility; which causes severe pain in her joints, chronic fatigue syndrome, she is bio chemically growth hormone deficient, has hyperthyroidism, precious puberty, cysts on her kidneys, a twist in her spine, is completely flat footed, and is suffering from obesity.

Add to this list the fact that Maddy also has autism, sever anxiety and a slight hearing loss and you can see why Maddy’s family needs some support.

Maddy’s days at the moment are a never ending merry go round of specialist medical and therapy appointments.

“She has to take 12 tablets a day, including pain medications and is now under the care of the pain clinic.”

Maddy has had medical issues since she was a baby and unfortunately it took the family years before they had any answers on Maddy’s medical issues and they still don’t know what the future is going to be like.

“Maddy is deteriorating so much at just 13 its horrible,” she said.

The family has set up a GoFundMe page to raise money to cover some of the out of pocket expenses this one income family is experiencing.

There is also a fundraising event at the Clare Castle Hotel in Raymond Terrace on the 6 July with auction, raffles, kids entertainment and live music to help fund Maddy’s Bucket List.



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