THE family of 16-month-old twin boys who have a very rare muscular genetic condition are hoping there will be a change to the support offered to provide transport for disabled children.
Melissa Anderton and Dean Farnworth, from Leigh, have two toddlers, Carter-Ray and Deacon-James, who have a form of centronuclear myopathy.
They have both had a tracheostomy and rely on ventilators to keep them breathing.
Carter-Ray and Deacon-James have had treatment at Alder Hey Children's Hospital in Liverpool since last April but are set to be discharged in March.
Due to the equipment needed for the twins, who both have wheelchair prams and other medical aids, their seven-seater vehicle, which is owned by Melissa, does not provide enough space.
A suitable vehicle would also have to accommodate the couple's older children, McKenna-Jean, four, and Hunter-Junior, three, as well as a carer for the twins.
Despite receiving a higher rate of care of Disability Living Allowance (DLA) since January 2019, the family were told it is not eligible to receive a vehicle through DLA funding until the twins turn three in September 2021.
Melissa, 24, and Dean, 37, make the journey from Leigh to the hospital every day before going back home to pick up McKenna-Jean from reception and Hunter-Jean from pre-school.
Twins Deacon-James Carter-Ray
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Melissa said: "It is tough with the twins being at hospital and not being able to go out at a family.
"We take it day by day with the twins.
"They cannot walk or support their heads but they can still interact with us and they are happy and smiley.
"We think there should be more leeway in the restrictions of DLA as not everyone is in the same situation.
"If we got a suitable vehicle it would be massive for us as a family and would give normality for the kids as we could go out.
"But if we can't get one we won't be able to go out anywhere including the summer holidays."
The family have also been in contact with charity Family Fund, which is working with DLA, about how it can offer support to provide a vehicle.
The organisation has a mobility scheme which is funded by charity Motability.
A Department for Work and Pensions spokesman said: “We appreciate the difficulties that some families with disabled children face.
"Disability Living Allowance is available for babies and children to help towards any care needs, and when a child turns three they can receive help towards their mobility needs.”
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