Young dad with rare condition dies five weeks after birth of daughter & More Latest News Here – Up Jobs

Newly engaged with a dream home under way, Michael Rohs had just become a father when a rare genetic condition led to him dying during surgery.

By the time of his death, the 28-year-old had lived for over 20 years knowing he had a condition that could reduce his lifespan.

Rohs’ parents, John and Margrit, first suspected something was wrong when he seemed to continually have bruises as a child. He also bled significantly from minor incidents.

After a long process, including sending a biopsy to Brussels, it was discovered that Rohs had type four Ehlers Danlos syndrome​ (EDS).

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Those with the condition are predisposed to vascular and digestive ruptures. While complications are rare in childhood, 25% of patients are affected before the age of 20 and 80% by 40.

Arterial ruptures account for most deaths from the condition, with the median age of a type four sufferer estimated to be about 50 years.

Although Rohs did not suffer many complications when he was younger, he did have significant health issues in his early 20s. At 21, he suffered a collapsed lung and a stroke, and in February 2021 he had his first aneurysm, near a kidney.

Rohs had been healthy the last year though. The day before he suffered another aneurysm that led to his death, he was “full of the joys of the world”, his father said.

“I had a whole day with him, and he needed to do baby shopping… There was no clue … that by 8am the following morning his whole life would change,” John Rohs said.

On July 19, Michael Rohs suffered another aneurysm and was rushed to Christchurch Hospital. Although in extreme pain, his condition stabilised enough for him to go home the next day. His condition deteriorated though, and he was readmitted for surgery.

The aneurysm had caused his spleen and kidneys to shut down, his bowel was impacted and an artery in one of his legs had started to weaken. He was rushed to surgery again that night, but doctors were unable to stop the bleeding because of his genetic condition. He died on July 21.

Heartbroken, the family decided to share Rohs’ tragic story to raise awareness of EDS.

Friends had also started a Givealittle page to help Rohs’ fiancée, Toni, and their baby daughter Mira.

It had been a tough time for the family. Although they knew Rohs could have a shorter lifespan, he seemed healthy.

“I’m still finding it really difficult to process that this beautiful little baby has arrived, and she is never going to know her dad,” John Rohs said.

He took comfort in how his son refused to let his condition get in the way of having a normal life.

“He was determined he was going to live life on his own terms, which he absolutely did, and he refused to give in to living in cotton wool.”

For his parents, Michael Rohs’ enthusiasm was sometimes difficult to watch, especially when he played soccer. When he decided to go skydiving, John was terrified the G-force might make him seriously ill, let alone the impact when he hit the ground.

“He was always trying to push himself. I think it was part of him wanting to be a normal young man.”

A successful draughtsman, Rohs’ world was complete when Mira was born in June.

“He was such a proud dad … overflowing with happiness and joy.”

Mira has proven a source of consolation for Rohs’ grieving family.

John Rohs hoped research would continue into the condition, as the doctors they dealt with often did not know much about it.

Its rarity meant it could be a long hard journey for sufferers to get diagnosed, which could lead to depression, advocate Kelly McQuillan said.

McQuillan, the founder and president of Ehlers-Danlos Society New Zealand, waited 22 years to be officially diagnosed with hypermobile EDS with vascular issues. Her symptoms included sprains and strains that healed slowly, chronic pain, gut issues and food allergies.

She was pushing to change the health system, so people with conditions like hers had access to better care. McQuillan also wanted to change legislation to accept chronic pain as a disability so sufferers became eligible for care.

Rare Disorders NZ chief executive Michelle Arrowsmith said getting a diagnosis remained a significant hurdle for many people with uncommon conditions.

A recent survey found it took over 10 years for one in five people with a rare disorder to get a diagnosis. One in three often felt unhappy and depressed and that they could not overcome their problems.

Arrowsmith said genetic services were “generally underfunded” and under-resourced and there were not enough geneticists in New Zealand to read reports and analyse results.

After lobbying from the organisation, the Government had promised to develop a strategy to ensure gaps in the system were addressed.

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