1 2 aim

The experience as mother of a Duchenne adult who recently turned 30

Elizabeth Vroom shares her experience as mother of a Duchenne young man who recently celebrated his 30th birthday.

Elizabeth Vroom is the mother of Justus, a 30-year-old adult living with Duchenne muscular dystrophy. Next to this she is also a prominent figure in the international Duchenne Community as Chair of the World Duchenne Organization. Duchenne Parent Project Italy is founding member of the World Duchenne Organization.

“We recently celebrated Justus’ 30th birthday. Due to Covid, we couldn’t organize the party we would have wanted, but for 30 days he celebrated it with his friends by carrying out different activities”, says Elizabeth.

A milestone that Justus’s family would never have expected when they received the diagnosis in 1992, because at that time the life expectancy did not exceed 20 years.

“From the beginning we did not accept the negative scenario that they were presenting to us. We thought that we would still have years ahead and that we could do the best we could in 20 years. Justus had a twin sister who died after five days. In five days there is nothing you can do for your daughter, but in 20 years you can do a lot and this has had an impact on the final result. Justus graduated, he is working and all this would never have happened if we had had a negative approach”.

Elizabeth shared her experience for the Italian project Donnenmd, an initiative promoted by Centro Clinico NeMO Of Rome together with Fondazione Policlinico Universitario Agostino Gemelli IRCCS and supported by Biogen, Novartis, Roche, Sarepta and Italfarmaco, and focused on women and neuromuscular diseases.

Watch the full interview here