I've raised £20000 to "For Lara & Maddie"
Organised by Rob and Paula Oag
Story
Lara and Maddie are much-loved little girls. Daughters of Jonny and Lucinda, a local family living in Totton. Sadly both Lara and Maddie have life limiting conditions which make every family moment together that bit more precious.
Lara (Age 6)
“We realised Lara had problems at around 5 weeks of age and from then it became a growing picture of an extremely debilitating condition. Lara is non-verbal, visually impaired, has profound developmental delay, is fed through a tube, has epilepsy, respiratory problems and severe curvature of the spine.
Despite numerous tests, including genetic testing at Great Ormond Street, nothing was found (to explain Lara’s condition). Our geneticists therefore advised us it was a one-off genetic condition.”
Maddie (Age 1)
“We had our second daughter, Maddie, in November 2016 and (cutting short a very long and emotional story) she developed seizures at 5 weeks.
Genetic science has moved forward greatly in the last few years and with us now obviously having a family genetic issue, more tests have been carried out and (devastatingly) both girls have inherited both of our mutated genes. To date, there are only 15 known cases of this condition worldwide and, very sadly, we have learned that it is a degenerative condition.” - Jonny & Lucinda (Lara and Maddie’s parents )
'For Lara & Maddie '
‘For Lara & Maddie’ is about making some changes to Lara and Maddie’s home that will remove unnecessary complications in their already complicated family life.
By providing the family with a new kitchen layout, the project will enable manoeuvring space for the girls’ wheelchairs, a better functioning open plan space to spend family time together and will mean Jonny and Lucinda can have a close eye on their precious girls at all times.
Time is of the essence. Lara has undergone several spinal operations in her young life. However her doctors have said there will be no more, and - should her spine deteriorate further- she will only receive palliative care in the future.
A team of local contractors have committed to donate their time in February 2018 to complete building works and to install a new kitchen.
Due to Lara and Maddie having a life-limiting condition it's vital that we act now in order to raise the funds to help improve the quality of life for these beautiful girls.
We cannot do this without your help ...
Lara & Maddie's God-Parents.
