MP backs campaign for twins
Leanne and Peter Barnett with MP Chris Skidmore
A MUM campaigning for a drug which could help her twin girls lead a normal life has won support from MP Chris Skidmore.
Leanne Barnett's twin daughters Olivia and Ruby have rare genetic condition called phenylketonuria - known as PKU – which means their bodies can't break down protein properly.
The girls, who are two, have to stick to such a strict diet it means every day life is fraught with anxiety.
If the twins exceed their quota, their protein levels will rocket and long-term this can cause brain damage, learning difficulties, anxiety, depression and behavioural problems.
Leanne, along with husband Peter, are campaigning for a drug called Kuvan to be made more widely available.
The problem is that the drug is so expensive it is rarely available on the NHS. Leanne has been told it could cost £100,000 a year for both girls.
Leanne, who lives in Kingswood, has now taken her case to MP Chris Skidmore as she hopes the government can put pressure on drug manufacturer BioMarin to make Kuvan more affordable to the NHS so sufferers can get it on prescription.
Chris said that being a father himself helped him understand how the condition must impact on leading a normal family life.
Chris, who recently met the couple at his office in Hanham, said: “I was delighted to meet with my constituent Leanne recently to discuss her concerns about PKU and vital alternative treatment for people with this rare condition. I really appreciated meeting with her and learning about the many challenges Leanne’s twin daughters and her family face every single day.
“As a father myself, I can appreciate how hard it must be to raise children and have to deal with the impact of PKU at the same time. I look forward to supporting Leanne in her campaign to raise awareness of PKU and will be taking this up with my ministerial colleagues as soon as possible.”
Leanne is encouraging people to sign a petition to reduce the cost of Kuvan.
So far, more than 17,000 people have put their names to the petition, which was started by Gateshead mum Barbara McGovern whose son Archie has the condition.
You can sign the petition by visiting https://bit.ly/2KK0vNz
LEANNE is organising a fundraising event next year with proceeds going to the National Society For Phenylketonuria United Kingswood (NSPKU).
The family disco and raffle takes place on Saturday March 28 from 6-11pm at Cleve Rugby Club in Mangotsfield.
Entry is £2 and includes a buffet with low-protein foods. Raffle tickets can be purchased in advance or on the night.
For more information and to purchase raffle tickets email firstname.lastname@example.org
If you are unable to attend but would like to make a donation, please visit Leanne's Just Giving page www.justgiving.com/fundraising/leanne7976
* Leanne is looking for knitters to make superhero bears so she can sell them at fundraising events and via Facebook to boost funds for NSPKU. If you, or your organisation, would like to help or find out more, please email email@example.com