Our beautiful son Rudi is now 18 months old....he has a rare complex and life limiting genetic condition.
Spinal Muscular Atrophy is devastatingly cruel,and effects the muscles we all rely on to move and most importantly to breathe and swallow.
Rudi's diagnosis came after we became increasingly concerned with his lack of movement and his inability to reach key milestones such as sitting and maintaining head control.
At 6 months old our peadiatrician confirmed Rudi had SMA Type 1 which is considered the most severe type.he handed us an information leaflet stating life expectancy was on average just 2 years.
Our strength to keep fighting and carrying on comes from Rudi.
We refuse to accept that we may lose him and we focus every second on making him smile and never giving up on him!
In February of this year we took our boy all the way to a hospital in Paris to start the first ever treatment available for SMA.
A lumber puncture injection used to administer the drug Nusinersen is given fortnightly during the loading stage of the treatment,and then 4 monthly for the rest of Rudi's life.
The drug is not a cure but it will hopefully increase Rudi's strength and most importantly improve his respiratory function.
Myself and the tight nit SMA community are doing all we can to make this treatment widely available to all babies children and adults with this debilitating condition.putting pressure on the NHS to provide an opportunity of much needed hope and help.
Myself and John would like to thank everyone who continues to show us much needed support,and thank all who have previously donated to Rudi's fund.individual donations and events organised by family and friends have lightened our load.
We are regularly getting asked to provide another fundraising page for future planned events.
All money will be used towards our regular travel expenses and hospital fees...
We are always looking at ways to improve Rudi's quality of life with equipment,toys etc.
THANKYOU💙