Madison’s Dream to help SMA babies and sensory impaired children
Once upon a time, there was a little girl who had a dream. That dream was to build a room for all the poorly children who needed it – a room filled with light, laughter and hope. That little girl was called…
Spinal Muscular Atrophy (SMA) is a genetic disease affecting the motor neurons in the spinal cord. It is currently a leading killer of infants and children – and with one in every 6,000 births being affected, it is a disease which is rarely publicised. Devastatingly, 50% of the the most severe cases of infants and children diagnosed with SMA, die by the age of two. However, less severe forms of the disease can see children live much longer but have the disability of loss of mobility and motor function – yet with a bright, intelligent mind intact.
Beautiful baby Madison was only eight days old when she was diagnosed with SMA, and sadly, at 17 weeks old her doting parents Jason Murray and Laura Kendall lost her to the heartbreaking disease on 19th March 2012. Fighting strong, and with the help of little Maddie’s Uncle Dean, they have now set up the Madison’s Dream charity in the hope that they may be able to raise enough funds to build a local sensory unit for thetreatment of babies and children with SMA and a variety of other sensory impairments – such as deafness, blindness and autism. Laura says,
“Anybody can benefit from a session within one [sensory unit] they are socalming and relaxing.”
So far, the charity has reached just over a staggering £22,000 of their £25,000 target after only starting the charity six weeks ago. An even more impressive figure when considering the charity have only held two events thus far. The most recent, a memorial event held at Burntwood Court, set pulses racing as Robbie Williams tribute singer Tony Lewis took to the stage and wooed the ladies with his fabulous act. The crowd cheered and danced along as Tony sang the well known hits that put Robbie to the top of his game.
There was also a lively performance from the Wakefield Trinity Wildcat Dolls followed by a moving speech from Jason, accompanied by a slideshow of Madison to the voice of Heather Small singing ‘Proud’.
A secret auction also took place to help raise funds with prizes including clothing worn by Barnsley actress Katherine Kelly as Becky in Coronation Street, Spa treats and signed football and boxing memorabilia. The collection of donated auction pieces was vast and touching – a display of the caring nature of everybody who pulled together to make the evening a success.
Laura and Jason breezed through the evening as perfect hosts, with brave faces for their little girl who was adored by all who met her. Madison’s Uncle Dean, who organised the event, said the memorial fundraiser was a fantastic evening which took a lot of hard work but was well worth the efforts.”It’s incredible once you have that inspiration what you can achieve,” he says, ”Madison’s story touched a lot of people and with all the support received, we will make Madison’s dream sensory room become a reality.” As guests and other parents who suffered a tragic loss of a child to SMA gathered together, one message was clear: a message of optimism in the wake of something so tragic, and a message of hope that SMA can be beaten.
“A life may last for just a moment…but memory can make that moment last forever.”
You can follow Madison’s Dream on Twitter @MadisonsDream and donate to the charity at the website: