In the search to find a cure for Harriet`s debilitating white matter condition, we have come across many stumbling blocks and have had to do a lot of research into what can only be described as a Stem Cell mine field.
Over the course of the last 3 years, we have constantly been told by senior medical professionals, that Harriet has a debilitating life limiting condition and to try and make the most of the short time we have with her. The doctors in the United Kingdom currently do not have a name for Harriet`s condition, which in turn makes it very hard for us to match a stem cell trial or pay for experimental stem cell treatment.
The United States of America, seem to be the main port of call on lots of new stem cell treatment and stem cell trials, which we are constantly checking on a daily basis.
On contacting some of the main stem cell companies, we were pointed in the direction of the International Society for Stem Cell Research, the world`s leading stem cell research organization, which provides some educational information for patients. The “what to ask” section identifies questions any patient should ask a clinic before considering stem cell treatment. The link to the organization can be found at www.closerlookatstemcells.org .
We were also told by one stem cell Company, that all clinical trials in the United States are registered with the National Institutes of Health (NIH), which maintains a searchable database of those trials at www.clinicaltrials.gov . Currently, the database contains 84,000 + trials with locations in more than 170 countries worldwide.
One of the first stem cell companies we found were based in Texas USA, they would have been happy to take Harriet on for a stem cell trial, but had to refuse Harriet, as we did not live in the state of Texas. There was also a Stem Cell company in Germany, that we were in contact with, but they were closed down before we were able to get Harriet seen by one of their medical team.
We then found that a lot of the stem cell companies across the USA and Worldwide, wanted a firm diagnosis from one of Harriet`s medical professionals in the UK, but were unable to give any form of diagnosis or prognosis and were quickly turned down.
One of the main stumbling blocks, is that the senior medical professionals that surround Harriet, have very little understanding as to what is causing Harriet`s medical problems and simply want to manage the problems, rather than find out what the condition is.
There is some hope, Dr. William Whitehouse, Harriet`s neurologist at the Queen`s Medical Centre in Nottingham, has said that he will continue to help us find our answers, where ever they may be. But has also told us that we must be cautious of Stem Cell companies that promise treatments, they may not be able to deliver.
The Blood core stem cells, from Harriet`s brother Michael are stored at the Future Health Bio Bank in Nottingham, which is only 30 minutes from where we live. These Stem Cells are key to any Stem cell treatment we may find in the next few months or even years. Michael`s Stem cells can be stored for a maximum of 25 years, but Harriet simply does not have time on her side and we must therefore find answers before time runs out.
The endless hospital appointments are necessary to monitor whether Harriet is getting any worse and help prevent any further problems, but there is no light at the end of this road.
Caring for Harriet is 24 hour round the clock management, suctioning is required to keep her airways clear, with medicines throughout the day and night to keep her alive.
Making time to find a stem cell consultant or company is something we try and do every day, writing e-mails to companies and then waiting for a reply they could take weeks or even months and can be very frustrating.
There is also the fund raising associated with getting a stem cell transplant, a rough guide would be about £100,000 , but this would depend on where the stem cell company was situated in the world, but this figure could be significantly higher . To date most fundraising campaigns have stopped, as we simply have not had the time to try and raise the necessary funds, as Harriet`s well being has been our main priority.
In an ideal world we could do with help from a sponsorship company and a medical research company, but we do not live in an ideal world and therefore anything we find will be down to us and us alone.
Jason and Lesley