It is sheer bad luck. My son should not have to go through this – it is not fair.
08:22, 21 May 2025Updated 08:22, 21 May 2025
Kayaan’s chronic health condition worsened through ‘tainted’ medicine that was nationally recalled
A mum and dad say they had to use Google to find a medical error that has left their son’s life in danger.
Khawer Khan and his wife Alaina from are facing a heart-wrenching situation as they desperately seek money for a private kidney transplant to save their 12-year-old son, Kayaan.
The young boy suffers from wolf-hirschhorn syndrome, a condition fraught with high-risk health issues including Chronic Kidney Disease (CKD), non-verbal communication challenges, and the necessity of a wheelchair for mobility.
Despite being informed about Kayaan’s complex health conditions early in the pregnancy through an MRI scan, which revealed a failing left kidney and an undersized right one, Khawer and Alaina, aged 51 and 41 respectively, have strived to provide a stable life for their son. Kayaan, described as a cheerful pre-teen, had been managing his CKD for 11 years without major complications.
Tragically, Kayaan’s condition deteriorated after he was prescribed a course of Vitamin D medication, which was later identified as part of a national recall for being ‘unsafe’. In a shocking turn of events, the parents claim they were alerted to this critical information by conducting a Google search rather than being informed by his healthcare providers, reports Yorkshire Live.
Kayaan with his dad Khawer Khan
Vitamin D drops manufactured by TriOn Pharma were found to have excessive D3 levels than what their labels specified, leading to a recall in January. This defective batch posed serious health risks such as triggering vomiting, anorexia, and potentially life-threatening heart issues.
As Vitamin D is crucial in managing the body’s calcium and phosphate levels, excessive intake can trigger a series of health problems, which is particularly concerning for individuals with existing vulnerabilities like Kayaan.
Initially, after starting the medication, Kayaan did not show any adverse reactions. However, by the time of his medical appointment in February, his condition began to raise concerns.
His mother, Alaina, shared her observations: “When we were giving Kayaan his medicine through a gastrostomy tube, I did not notice anything was wrong with him except that he was tired a lot more than usual,”.
At first, Alaina attributed Kayaan’s increased tiredness to either his school workload or rigorous physiotherapy sessions, unaware of the underlying issue. Since they have their unique way of communicating, Alaina did not immediately pick up on Kayaan’s distress signals.
Their routine appointment on February 19 took a drastic turn as they had to rush Kayaan to the hospital almost an hour later and secure a ward for him. Subsequent medical tests revealed his Vitamin D levels were alarmingly over 7-fold of what is considered normal.
Alaina recounted: “He was hooked up to an IV drip but no one would tell me what was wrong.”
She added: “They just said he was dehydrated and that his levels were high – such as electrolytes. I thought this was very strange as he is a normally healthy and hydrated. The nurses told us that his vitamin D levels were dangerously high at 1089 – compared to his usual levels which were 150.
“He was in hospital for seven weeks until he was discharged and It was only then that I was told about Vitamin D toxicity but nothing more than that. Taking to Google, I had found out what it was and then saw that two of the products in a ‘tainted’ batch of medicine was given to my son.”
Kayaan had been ‘stable’ with his CKD for 11 years
The family was left devastated when they learned that Kayaan’s chronic kidney disease had escalated to Stage 5 – end-stage renal failure – due to the excess Vitamin D. Doctors have expressed hope that his condition might improve, thus avoiding the need to place him on a waiting list for a kidney transplant.
However, Alaina and Khawer have been informed that he will require a transplant within two years, while the NHS waiting list extends to three.
Alaina expressed her frustration, saying: “This has put us in a bad position as we cannot just wait to see what happens. This would not have happened if the medicine had been monitored. The doctors hope he will get better but as a parent you cannot just sit around and wait.”
Khawer echoed her sentiments, stating: “We just cannot believe that he has gone from being ‘safe’ in stage 3 to suddenly stage 5.”
In a bid to save their son, the distraught parents have initiated an ’emergency fundraising campaign’ which they launched in March. Despite having collected £22,000 so far, they still find themselves £48,000 short of their £70,000 target needed to pay for the surgery and vital post-operative care.
Kayaan Facetiming his dad in hospital in February
The sum required breaks down to £42,000 for the operation itself, with a further £6,700 needed each year for continued care after the procedure. In addition to the fundraiser, the family is raffling off their second car among other items to boost their funds.
Alaina expressed her gratitude: “We are grateful for the help of friends and family as well as others who have helped us raise £22,000 already.”
She also touched on the emotional toll of the situation: “No one should have to go through this. It is bad luck. I will also be putting a plea out soon for donors. Myself and my daughter will be putting our names down, so I am hoping others will too to try and save my son’s life.”