Rainbow Trust helped so much
I HAVE enjoyed spending precious time with my family this summer and August was particularly special because it is National Spinal Muscular Atrophy (SMA) Awareness Month.
We know only too well the importance of raising awareness of this genetic muscle wasting disease after our son Hadi, who will be two this month, was diagnosed with SMA Type One at just eight weeks old.
The disease affects all the muscles in Hadi’s body. He is tube fed, unable to swallow or to sit up unaided and can have difficulty breathing.
We have sought solace in Rainbow Trust Children’s Charity, which paired us with a family support worker, Vilja, who helps us at home, in hospital and in the community.
We have been overwhelmed by Vilja’s expert knowledge and care, helping us with every single aspect of our lives. We do not know what the future holds for Hadi but we feel reassured because we have Rainbow Trust.
If you can, please join us in supporting Rainbow Trust by visiting rainbowtrust.org.uk and donating. Sanaa Sebbata Rainbow Trust Children’s Charity