Living with Kidney Failure from Age 10: Battling a Rare 1-in-3.5M Disorder and Uncontrollable Shaking

I’m sorry to hear about the challenges Jessica Kemp and her daughters are facing. It seems like both of her daughters have been diagnosed with cystinosis, a rare and incurable disease. Cystinosis is a genetic disorder that causes the amino acid cystine to accumulate in various organs of the body, leading to the formation of crystals.

The fact that Jessica discovered this condition while she was 8 months pregnant with Poppy-Mae indicates that it’s a hereditary condition, and the odds of getting the disease are extremely rare (1 in 3.5 million). It’s undoubtedly a difficult situation for the family, especially with both daughters having a nasogastric tube placed in their stomachs overnight due to difficulty swallowing.

It’s heartening to hear that the daughters can find comfort in each other’s company. Managing a rare disease like cystinosis can be emotionally and physically challenging, and the support of family is crucial.

If you have specific questions or if there’s anything else you’d like to know, feel free to ask.

It’s a heartbreaking situation for Jessica Kemp and her daughters, Emily and Poppy-Mae, who have been diagnosed with cystinosis, a rare genetic disorder affecting only 2,000 people worldwide. The disorder causes a buildup of the amino acid cystine in the cells of the body, leading to the formation of crystals over time, particularly in the kidneys, eyes, thyroid gland, and liver.The article highlights that in the past, very few people with cystinosis survived into adulthood. The sisters, despite facing a future kidney transplant, are confronting an uncertain future together. Jessica Kemp explains that their bodies are slowly being taken over by crystals that build up in their cells.

It’s a challenging and uncertain journey for the family, and the mention of a kidney transplant in later life suggests the severity of the condition. Cystinosis is indeed a rare and devastating disease, and the family is likely to face numerous medical challenges in the years to come.

If you have any specific questions or if there’s anything else you’d like to know, feel free to ask.

It’s truly touching to see the bond between Emily and Poppy-Mae in the face of their challenging circumstances. Despite the shorter life expectancy associated with cystinosis, Jessica Kemp finds solace in the fact that her daughters have each other for comfort and support.

The shared experience of dealing with the impact of cystinosis seems to have created a strong connection between the sisters. Jessica mentions that when one of them feels sad or nauseous after taking medication, the other is there with a comforting hug. Additionally, Emily ensures that Poppy has a toy during hospital appointments to make the waiting room experience more bearable for her.

It’s heartwarming to see how the sisters care for each other and find ways to bring comfort and joy, even in challenging situations. Their mutual support provides a source of strength for both of them and for their family as they navigate the complexities of living with cystinosis.

If you have any further questions or if there’s anything specific you’d like to know, feel free to ask.

The family’s journey began less than a year after the birth of their eldest child, Emily. Despite being perfectly healthy initially, Emily suddenly started vomiting frequently and losing weight. Doctors initially believed it was a contagious virus, but Jessica’s instincts told her otherwise.

It’s not uncommon for parents to rely on their intuition when it comes to their child’s health, and in this case, Jessica questioned the initial diagnosis. The article mentions that the doctors were convinced it was a contagious virus, but Jessica suspected otherwise.

The passage also touches on Emily’s early months, describing everything as fine until she was around 10 months old. It highlights the abrupt onset of symptoms that led to the eventual diagnosis of cystinosis, a rare genetic disorder affecting the family.

If you have further questions or if there’s anything specific you’d like to know, feel free to ask.

The family faced a challenging time as they sought answers for Emily’s health issues. Despite multiple visits to the hospital over a five-month period, the doctors initially couldn’t identify any problems, leaving Emily’s parents, Jessica and Darren Atkinson, feeling anxious and frustrated.

Doctors at Leeds General Infirmary conducted a battery of tests, exploring various potential diagnoses from leukemia to cystic fibrosis. The rarity of Emily’s condition, cystinosis, contributed to the prolonged diagnostic process.

It took eight months before they finally received a call informing them that Emily had cystinosis. Jessica expressed the intense nervousness they felt during the waiting period, as Emily continued to lose weight, and they were uncertain about the cause.

The diagnosis revealed that the accumulation of crystals in Emily’s body was causing damage to her organs. The family learned that Emily was one of only 2,000 people in the world diagnosed with cystinosis, making her case exceptionally rare at 1 in 3.5 million.

If you have more questions or if there’s anything specific you’d like to know, feel free to ask.

The family faces significant challenges in caring for Emily and Poppy-Mae, both of whom have cystinosis. Emily, the elder sister, requires medication for the rest of her life, and she currently has a feeding tube through her stomach to provide nutrition at night. A kidney transplant is anticipated in the future.

The parents were informed that there was a one in four chance that any other children Jessica had with Darren would also have the condition. Unfortunately, Poppy-Mae was diagnosed with cystinosis shortly after birth.

Despite the difficulties, the girls demonstrate remarkable resilience and support for each other. Jessica and Darren now serve as full-time caregivers, managing the girls’ medication schedules and addressing the challenges posed by cystinosis. The disease affects the girls’ eyes, requiring eye drops due to the sensitivity caused by the buildup of crystals. Gastrostomy tubes are used for feeding as the disease impacts their ability to swallow.

Sleepovers might become an issue as they grow older, but the family remains determined to adapt. Despite the obstacles, the girls maintain a positive attitude, enjoying outdoor activities and having a love for animals. The family faces and overcomes challenges together, and the girls have adjusted to their way of life, looking out for each other and displaying a cheerful spirit despite their health condition.

If you have further questions or if there’s anything specific you’d like to know, feel free to ask.

VIDEO:

Kai

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