- Mahmoud Al-Najjar
Edith and Sebastian, a Canadian couple, dreamed of a happy family and already had four children. The couple lived a happy life with their children until they discovered that three of the children had a rare disease that causes vision to gradually deteriorate until they lost it completely in their mid-thirties or forties.
When the eldest daughter, Mia, who is now 12 years old, was three years old, her mother noticed that she bumped into walls and furniture while moving around the house, especially at night.
After four years of tests and analyses, the mother discovered that Mia had retinitis pigmentosa, which is a rare genetic disease that gradually diminishes the vision of its owner until he loses it completely when he reaches the mid-thirties, and affects one person out of every 4 thousand people, according to American Academy of Ophthalmology.
In 2019, Mia’s two younger brothers, Colin, 7, and Lauren, 5, were diagnosed with the same symptoms, and only Leo, 9, survived.
Positive despite the crisis
Edith explains in an interview with the BBC that she and her husband decided to accept their children’s illness and look at the matter positively, and they also wanted the children to see this disease as a challenge that would make them strong, and not as a problem that stopped their lives at the beginning.
That positivity was transmitted to the children immediately, so they decided to enjoy their lives.
The family thought of innovative solutions to deal with the children’s illness, so it thought of creating new visual memories for them before they completely lost their sight, so the couple took their children on a trip around the world, so that the children acquire more coping skills, which may benefit them in their future lives.
In March of last year 2022, the journey began, and the family visited 13 countries, including the Sultanate of Oman, Turkey, Nepal and Mongolia.
Finally, the family came to Egypt, where they received an invitation from the Egyptian Tourism Authority when they learned of the story. The family immediately responded to the invitation, expressing their happiness with the trip and enjoying visiting the Egyptian archaeological sites.
The mother said in her interview with the BBC that the trip to Egypt was different, as it is a wonderful feeling to be in a country with a history that extends for thousands of years.
During that trip, the family learned about the culture of the country they visited, got to know the local people, and shared with them their customs, such as preparing food, tanning sessions, and riding horses and camels.
The family also embarked on many adventures, such as skiing, surfing, diving, and mountaineering.
Mother Edith says that the budget for the trip around the world was not available at first, but the money was available in an unexpected way when husband Sebastian sold some of the shares he owned in a company in Canada.
Edith explains that traveling with the children for a year, and being together all the time, created a strong bond between them that had not existed before this trip.
With a wide smile, the mother concluded, saying: “Maybe my children were not lucky with this disease, but they are strong enough to overcome it.”
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