Fareham family thank community for support as daughter mystifies doctors with condition undiagnosed for 17 years
‘She is the most phenomenal little girl I have ever met’
An “exhausted” family from Fareham have thanked the community for its support as they face an uncertain financial future with their daughter hospitalised with a condition that has mystified doctors for 17 years.
Chris and Natalie Cox, 46 and 42 respectively, from Fareham, have spent the last two and a half months splitting their time with their daughter Maddison at Queen Alexandra Hospital in Cosham and their 14-year-old autistic son Taylor who has been housebound for three years.
Maddison has had health issues all her life with a 20 week scan revealing an issue with her heart, however from birth a number of other issues arose. She has never been able to drink or eat and she is reliant on an electric wheelchair to get round. However, doctors and consultants have never been able to determine the reason for her condition.
Natalie said: “After she was born she didnt feed for 24 hours and she was vomiting green bile so she was taken to intensive care where it unfolded that she had problems with her kidneys. She was tube fed from 24 hours and she has never been able to drink or eat ever as she doesn't have a safe swallow but nobody really knows why.
“We have had multiple genetic testing, we have been on multiple studies. Maddison was the first child in Southampton to be on the genome study. We got a partial diagnosis of NRF2 de novo which explains why the heart is the way it is but it doesn’t cover everything else.
“Every organ that Maddison has is damaged to some degree. She never grew properly and she has had multiple surgeries to reset/realign her bones. She has had problems with her stomach her whole life.”
Two years ago she ended up in QA because her stomach stopped working and she subsequently had to be fed through her bowel. In July this year, that solution also faltered meaning she is now fully dependant on Total Parental Nutrition (TPN) where essential nutrients is delivered directly into the bloodstream via a intravenous catheter.
Natalie said: “This is our last option of feeding her now so if this stops working then we do not have any other way for her to be fed. It has been a very long journey.”
While the couple thanked the incredible support received from friends and family, the pressure of being there for their daughter as well as supporting their son at home has meant they have been unable to work. It is a stress they have lived through for many years, with Chris losing his job two years ago after having to juggle the commitments of work and his chronically ill daughter.
Both are now full-time carers supporting a young lady with specialist needs while Natalie also works two nights a week caring for another lady with a brain injury. Both have had to stop.
Natalie said: “It is frightening to be in a situation where you don’t know what the future holds for your child in the first place, then to think how on earth are we going to keep a roof over our heads.”
Chris added: “Our son has not left the house for three years. he can’t be on his own so we are juggling with staying with him to keep him safe and being at the hospital to be with our daughter, all while trying to earn a living. It is two of us trying be in three places at once without any income coming in. Any savings we had went.”
Seeing them struggling, a friend started a GoFundMe page asking for urgent help for a “truly special family”. At the time of writing it has raised £8,212 of its £9,000 target as the community rallies around the Cox family.
Natalie and Chris described the support as “absolutely phenomenal” as they hope for Maddison to be home for her 18th birthday in early December.
Maddison had surgery on Monday and is due to have an MRI this week.
Chris said: “This has been the story of Maddison’s life, we do not know and the doctors do not know. She is a bit of a mystery to a lot of consultants and a lot of hospitals in that she doesn't fit into any box. We are hoping that something comes up in the MRI that they can treat. If it doesn’t then we are still in the unknown.
“She is so complex, blood results don’t match what her body is doing, We have been up to Great Ormond Street, Evelina Children’s Hospital, St Thomas’s, Southampton, QA and we have no definitive answer on why any of this has happened.”
Throughout the challenges they faced, they have been able to call on support from friends and family, describing themselves as lucky with many parents they speak to on the ward not having the same support unit.
They have also benefited from the services offered by local charity Sophie’s Legacy.
Chris said: “Sophie’s Legacy are incredible. It is because of them that we get fed in the hospital as well, three meals a day. The first 15 years of Maddison’s life that was not around so it was even more costly. There is also a support worker in QA who is on hand to speak to Monday to Friday when you need it.”
The parents have said they are mentally and physically exhausted and want to raise awareness for the countless other families across the country that are going through a similar experience of raising a chronically ill child.
While Maddison continues to struggle with her condition, her incredible character shines through.
Natalie said:” She is very sassy. She is incredible and she is the most phenomenal little girl I have ever met bearing in mind what she goes through.”
Chris added: “She is very vocal, her speech is a little bit delayed but the more time you spend with her the easier she is to understand. She is a very big character. Just yesterday we had a phone call from her college, as she has not been there since June, saying they miss her and the place isn't the same without her. For someone very short in stature she has a huge personality”
Details on how to support the Cox family can be found on the GoFundMe page.