Rain­bow Trust helped so much

Harefield Gazette - - YOUR SAY -

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

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