There are no established agencies here in NZ to offer conferences like these for my boys conditions. To go to these would be just amazing.
1st MPSI parent conference weekend UK 25-27 Sept 2015 will see for the first time ever parents of children with MPSI will meet. (some will have young children currently living, some will have children that have left our earth - I fit both these as a parent). At this weekend we will be meeting a UK DR who is doing genetic research specifically into this condition. I will also be presenting a 'summary' of data of families that I have been collecting over several years. We will be showing our new video honouring our "angels", discussing equipment, medications and other ways to help our kids live the best life possible. But most of all we will be together in person for the first time ever. to be able to give each other a real hug (not a cyber hug) to laugh together, to cry together, to show that distance and separation around the world is no boundary to being there to support each other.
See below for more information about MMPSI and my boys.
Lily Foundation 2nd parent conference weekend 11-13 Sept 2015. Lily Foundation is the UK Mitochondrial disease foundation. I have been following the Lily Foundation since it started in 2007. At this weekend I will be able to learn about diagnosis of this condition, current research, future treatments as well as dealing with grief and helping your children through grief from loss of a sibling. While in the UK I will no only get to go to this conference but also spend time at the foundation itself, discussing how they became so well established, what has and has not worked etc with the aim that I can continue to help establish Mitochondrial disease awareness and supports for families here in NZ.
See below for more information on Mitochondrial disease, my boys, a link to what our family is trying to achieve in NZ.
For me (and if we are really lucky our whole family will go as both these are family weekends catering for children with these conditions and siblings) to be able to go to both of these conferences in one trip is just beyond words to describe, a dream, a wish, something I can only hope for and that would not be possible without kind donations from others. We have never asked for money for a personal cause before and found it very hard to establish this page to ask people to donate, as everyone has wishes, dreams, needs. We look at life with a glass half full attitude, accept what we have and find ways to live life daily, are thankful for today and have no expectations of what tomorrow will bring. Please help me/us go it is a once in a life time opportunity especially since both these conferences have lined up at similar times.
If you are looking at this from May 2015 you will see I have enough money for myself to go (but not the rest of the family) as I begin to make plans I am faced with the reality that I am the sole income earner and am currently investigating time off work which has to be taken as 3 weeks leave without pay and my fear at the moment is that if I go I will leave my family short with no money while I am away or that I will have to make the decision not to go in the best interest of my family financially in order to be able to go to work to pay our bills etc. Donations do not need to be big every little bit helps, for when it is all put together that is how you see the dream becoming a reality and the wish being granted. THANK YOU for taking the time to read this page.
For those who do not know us. We are the Pickering Family. Sarah and Aaron – we have had 3 children (2 boys and a girl) Our eldest son was born in 2001 and diagnosed in early 2002 with MMPSI (first child in NZ to get this diagnosis) – he lived with us here on earth for 10 yrs 3 days and 2 hrs before he flew off suddenly and unexpectedly to live in outer space amongst the stars. We also have a daughter born in 2004 who is our only ‘normal’ child. In 2009 we had another son who was also diagnosed with MMPSI at 4 months of age, then at 3 yrs was suspected of having mitochondrial disease (after my conversations with the Lily Foundation in UK) 2 yrs of testing has confirmed that he does also have mitochondrial disease. He is our ‘cheeky little leprechaun’ and is currently 6 yrs old. If you would like to find out more about MMPSI or Mitochondrial disease please continue to read on further.
MMPSI (Malignant Migrating Partial Seizures in Infancy) is a very rare form of epilepsy that tis resistant to anticonvulsant medications. It affects children before the age 6 months. It is a very complex medical condition that leaves children developmentally in a ‘baby like’ state while their bodies continue to grow. Over time the children also develop several other medical issues and it is almost always fatal during childhood years. To date there have been less than 100 children worldwide diagnosed with this condition since it was first given a name in the mid 1990’s and it is said to affect less than 1 in every million babies born. There is currently no effective treatment/drug and no known cause for this condition. While science is making huge advances in their knowledge and understanding about genetics and developing new medications the outlook for the children with this condition is still very grim and heart breaking reality for many parents. Approx. half the families in our on line group have lost their children but each year we also welcome new families to our world of support. Up until 2013 we have been the only family in New Zealand to have children diagnosed with this condition and one of only 4 families in the world to ever have 2 children with this condition. A great web site about MMPSI is http://www.niamhsjourney.com. I will get to meet Nimah family when I go to the UK, we are very close friends.
12 yrs ago I became one of the foundation parents to start an on line MMPSI (Malignant Migrating Partial Seizures in Infancy)support group via the internet. Little did I know at the time that 12+ yrs later I would still be a very active member of this group and that my youngest child was also to be diagnosed with this condition. Through this time our group has openly shared our highs & lows, our best times & our worst. We have supported each other through not only the lives of our children but for many of us also their deaths. As parents we have understood implicitly what each other’s lives are truly like. While many of us have wonderful people around us that support us in person these are the families, the parents, the children that we feel we are deeply connected to – a chosen or created FAMILY connected through relationships & bonds other than blood. We discuss, offer advice, support, and experiences with medical issues, drugs, equipment, hospital admissions, Birthdays, buying Christmas presents, having more children, siblings, funerals, grief, angelversaries, memorials, new genetic discoveries, medical developments/advances … the list is endless.
Mitochondrial Disease: Is a complex medical condition that has only been discovered by science in the past 30 yrs. Your body is full of cells and these cells are responsible for all the functions and systems in your body. Every cell in your body apart from red blood cells have mitochondria. Mitochondria is the energy source of the cells, it gives them the power to do their job. without enough energy/power the cells cannot do their job properly. People with Mitochondrial disease are all affected differently but this disease is always progressive and always life limiting. It causes cell loss within the body. This loss will lead to system failures (eg heart failure, or digestive system failures) and these failures lead to death. Currently there is NO treatment for mitochondrial disease and a we can only hope for treatment or a cure to be available in the future as science investigates this disease. Go to Lily Foundation web page to see the type of foundation I will get to experience in person.
Mitochondrial disease in my youngest son has lead to significant cell loss in his brain (our bodies source of life) He is said to have a rare and severe form of multi system progressive degenerative disease. This disease will cost him his life.
If you would like to follow our family in their endeavours in NZ, to help others and for our boys lives to be worth more than the amount of breaths they tool and our family to have a bigger purpose. Then please like our FB page: Pickering Family Endeavours.
Plans and booking have started 1 June 2015
so both conferences are booked, exciting to think that this actually may be happening. Next on the to do list is to get a passport, book flights, and apply ofr time off work (which has to be leave without pay ..opps I didn't factor that in to my financial equations before now ... but if this is meant to be it will be. Also I am 'shopping' or looking out for NZ specific outdoor gifts that I can take and leave at the graves of those children who we have known but who have departed our earth. I want to leave something there that is NZ specific as a way of saying we love you and we remember you and from your friends Isaak & Kayne. It is both exciting and scary to think that September is just 3 months away.