The parents of Jayme van Pelt, the boy who died last year at the age of 3 from the rare muscle disease SMA, have lost another child. Their son Gaja Rayner was born last week by emergency c-section, but died the same day.
On the day before giving birth, Arwen has several bleeds. “The bleeding doesn’t really seem to last, it was more like a wave. But real blood and no amniotic fluid.” She is told by the doctor that a caesarean section must be done. There would be no ‘code red’, but they don’t want the baby to go through a normal delivery.
He hasn’t even lived twelve hours. Gaja Rayner was born on June 19, 2023 at 10:21 am. ,,He was born with an emergency c-section and had a difficult start. We finally let him go to his big brother Jayme at 10:06 pm,” his mother Arwen writes on Facebook.
“It’s unreal. Too much has happened in a single day to comprehend. How can you handle this anyway? That same morning I had woken up with a baby in my stomach. And now I had the sweetest baby Gaja in my arms and he was gone.”
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It is the second time that the Rijswijk parents have lost a child. Their son passed away last year Jayme at age 3. The boy suffered from the rare muscle disease SMA. The family became well known for the expensive treatment with the drug Zolgensma.
At the time, Jayme’s parents did not have enough money to pay for the gene therapy. At that time there was no possibility for the treatment in the Netherlands. Doctors from the Dutch SMA Expertise Center did not support this treatment method, but he could be helped in Hungary.
Fundraiser
To ensure that Jayme could still be treated, a fundraising campaign was set up in the spring of 2020. It started in Spijkenisse, the former home of father Jeff, and continued to expand. Well-known Dutch people such as Jim Bakkum (who released a special song for Jayme), Glennis Grace and Ajax player Joel Veltman and TV personalities such as Beau van Erven Dorens and Henny Huisman also ensured that money was collected for the sick boy.
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No less than 2.2 million euros came in through crowdfunding and Jayme was able to travel to Budapest with his family in August. After the treatment, Jayme got better for a while. Yet it has not been able to prolong its life much. Arwen, Jayme’s mother, shared a photo of her son on Instagram in June last year and the sad news that he had passed away. “On 6/16 at 3:05 PM, we lovingly let Jayme go.” He was three years old.
Farewell again on the first day of death
Gaja’s funeral took place last Friday. Exactly on the same day as his late brother Jayme’s ceremony. “Last Friday we commemorated the first anniversary of Jayme’s death. Now we say goodbye to our sweet baby Gaja,” writes mother Arwen.
She has to explain to big brother Jonna that both his brothers are gone. “He was so looking forward to becoming a big brother himself. Now he must miss his big brother. Baby Gaja did not go home. Baby Gaja went to heaven. To Jayme. Explain that to a two-year-old,” she continues.
Especially in need of rest
The photos of the children and their ashes are in Arwen’s closet. “One with a lot of memories to fall back on. The other with only the hope of a wonderful life that was not allowed to be”. She has a lot of gratitude for what she got to experience with Jayme and cherishes the little moments with Gaja. The family now mainly needs rest.
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