Making Memories With Ruben

Two year old Ruben has been diagnosed with Metachromatic Leukodystrophy (MLD). MLD is a rare genetic brain disease, there is no cure or effective treatment.  Ruben’s prognosis has been given as possibly 6 months to 2 years. There are no words that can describe the complete and utter shock, grief and helplessness that this family felt when hearing this news

Ruben’s parents Paul Cryer and Rachel Taylor met through their volunteering with CFS. In fact their first date was at a CFS dinner.

Prior to the diagnosis, Paul and Rachel started building a new house, they wanted a loving home to bring up their family. Paul was made redundant, he now often works 7 days a week, on fruit and vegetable blocks, doing mechanical work or, at the local bakery to make ends meet. Rachel works casually at the local child care centre.  On the 3rd March they received the keys to their new house but cannot move in as it needs painting and outside work completing things, that they intended to do themselves  to save money.

Living in Waikerie, a small country town in South Australia, has its benefits, it has a wonderfully supportive local community, however, there is no local access to specialist medical support necessitating the need  to travel  to Adelaide for these appointments.

The aim is to raise funds for this beautiful family so they can enjoy the time they have left with their son, it will allow them to make some amazing memories together and help them with some of their day to day expenses, removing some of the financial stress that is inevitably affecting this family at a time when they need to be enjoying each other as much as they can.

Whether you can help raise funds through a sponsored activity, or by giving a direct donation, thank you very much as every little bit helps, no matter how big or small.