More Useful Charity Links

Angel Flights:

This is a small American charity that, in some parts of the USA (mostly the heartland), gives free private flights for seriously ill patients, usually children. This would be in a situation where, for instance, the patient needs to travel long distances for medical treatment, and it would be too slow/uncomfortable for them to travel on land, and public air flight is not practical/possible/feasible. It is run entirely by volunteers.

http://www.angelflight.com/

Songs of love:

This is run by a group of professional singer/song writers. They write special, personalised, loving songs for children of up to 21 years old facing life limiting or life threatening physical, emotional or medical problems. This is to help the child recover/cope or just to give an emotional lift and some encouragement. The style, vocals, tune and lyrics are all personal to the child in question.

http://www.songsoflove.org/

Caringbridge:

This is a website where people facing serious/complex medical challenges can easily keep select friends and family up to date about their condition. You can create your own web page for free, giving it its own design, and name. You can upload about 60 photos, and you have a guest book that visitors to the page can sign. There is a space for you to write about your life/hobbies/personality/ etc. and the process leading up to diagnosis, along with medical history. There is also a space where you can post links/resources, and another space where you can post medical/life updates/thoughts in the form of a blog.

http://www.caringbridge.org/

Torbay Holiday Helpers Network:

This is a British network of hotels and resorts that offer free holiday stays to families with children who are seriously/terminally ill or who have been recently bereaved.

http://www.thhn.co.uk/

Starlight:
You may have heard of Make-A-Wish in America. This is the British version. The charity grants wishes to seriously or terminally ill children. Such wishes might include objects of desire (e.g. swing set), holiday, extra special activity (e.g. swimming with dolphins), meeting a revered celebrity, or fulfilling an ambition (e.g. to join the fire fighters).

http://www.starlight.org.uk/

Ronald McDonald House:
This is free accommodation near hospitals throughout the UK, for families with children facing hospital treatment. It aims to create a home from home environment, and as such part of this involves parents of children staying there sharing small ‘normal’ household tasks.

http://www.rmhc.org.uk/

Songdrops:

An archive (frequently updated) of cheerful, innocent, fun, loving and uplifting songs that can be loved by adults and children alike.

www.songdrops.com

Another Link - Samuel's Formula

This is a link about tube feeding formula. It is about a family with a kid called Sam, who was fed through a G-tube due to heart problems. His parents were very uneasy about feeding Sam commercial formula as it is basically just water, corn syrup and fortified milk powder. Therefore they came up with their own formula which tastes good, runs smoothly through tube feeding equipment, and is nutirionally complete and optimal. They have a website:

http://www.samuelsformula.com

On the website is a detailed, and I mean detailed(!), video narrated by Sam's father about how, and why, they came up with this formula, as well as how to make your own variations of this. He also talks about why each ingredient is used and Samuel's own story, and, most importantly, he teaches you how to experiment safely until you find the nutritious and tasty formula that works for your loved one with leukodystrophy.

If green goo or power juice (both described earlier in this blog) do not work well for your loved one with leukodystrophy, or you want something to supplement them, then, as always, talk to a nutritionist or other specialist (as I'm not one!) and mabye this formula or a variation will be suitable.

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BASIC OVERVIEW OF HOW TO MAKE SAMUEL'S FORMULA

Full List of Ingredients
Organic pork chops
Organic pork liver
Organic banana
Organic eggs
Organic rewer’s yeast
NOW full spectrum minerals
Organic coconut oil
Organic wheat germ oil
Organic flax seed oil
Organic strawberries
Organic honey
Organic cod liver oil
Grape seed antioxidant
Optibac probiotic
Organic cranberries
Organic bio yoghurt natural flavour
Fybogel
Organic butter
Organic vinegar
Spring or tap water
Acerola berry juice

BEFOREHAND

1. Cook Broth

Ingredients:
Pork chops (low in thiols - sulphur containing chemicals that may aggravate some forms of leukodystrophy)
2 pints (4 cups) natural mineral water
2 tablespoons organic vinegar

Cut off the wings and remove the neck, fat glands and the gizzards from the cavity. Cut chicken parts into several pieces, especially neck and chicken wings. Place chicken or chicken pieces in a large stainless steel pot with water, let stand 30 minutes to 1 hour. Bring to a boil, and remove scum that rises to the top. Reduce heat, cover and simmer for up to 36 hours. Remove carcass. Let cool and remove chicken meat from the carcass, saving for other purposes. Strain the stock into a large bowl and reserve in your refrigerator until the fat rises to the top and congeals. Skim off this fat and reserve the stock.

2. Cook Liver

Ingredients:
4 oz pork liver (again low in thiols)
Organic butter

Saute quickly in butter.

3. Combine Liver and Broth

Blend cooked liver with 1 pint broth and combine with the rest of the broth. Freeze into separate half pint portions until ready to use in formula.

4. Soft Boil 3 organic Eggs

5. Extract the yolks and discard whites

6. Blend the yolks with 1 banana

7. Freeze in a small container until ready to use in formula

8. Repeat until 12 portions of egg-yolk/banana are made

Making the Formula Each Day

9. Get a frozen portion of liver/broth mix and mix in a frozen portion of egg/banana mix

10. Stir in 1 tablespoon nutritional yeast, 1 tablespoon coconut oil, 1 tablespoon flax seed oil, 1 teaspoon cod liver oil, 2 teaspoons wheat germ oil, 1 teaspoon acerola juice, half a crushed NOW full spectrum mineral tablet, one grape seed antioxidant tablet, some optibac and one sachet of fybogel

11. Blend

12. Stir in bio yoghurt – 1/2 a pint

13. Cut strawberries in half and add with cranberries and 2 tablespoons of honey. Blend

Beckman Oral Motor Therapy

I owe so much to Brad Fisher, father to five year old Shira Fisher (SMA type 1, which also causes progressive movement loss) in terms of information for this site. He and his wife Maxine are parents that had to advocate and lobby and bully the stubborn health officials to get what Shira needed, and have largely created their own (very effective) care plan for Shira. Brad has posted so many videos about how he cares for Shira, and they have also put together Shira's website with many care links:

www.asonginthisworld.com

He has posted videoes on Youtube of Shira's Beckman Oral Motor Therapy routine. Since it is difficult to describe I am going to link you first to the Youtube videos of the therapy Brad and Shira do, and then (hopefully) to the page on his site where you can read the brochure describing the exercises.

As I mentioned before, Beckman Oral Motor Therapy keeps the jaw and lips loose and supple, which is important for keeping as much movement as possible. Movement is important as it might help communication to some extent, teeth brushing, suctioning, smiling and many other functions.

Here is the link to the first Youtube video (you should be able to access the others through the suggested thumbnail videos to the right of the main one):

http://www.youtube.com/watch?v=KKxbexuV804&feature=related

The second link is the link to the diagrams for the Beckman Oral Motor Therapy that are posted in PDF format on Shira's website.

http://www.asonginthisworld.com/images/client_pics/Beckman%20Motor%20Oral%20Therapy.PDF

I know the diagrams may be hard to follow as they aren't that clear, but printing it out should make it clearer. It is also worth looking at the care page the Fishers have compiled as there is a wealth of links and information provided about so many important areas and there are bound to be important points that I have not heard of or forgotten to mention in the blog.

http://www.asonginthisworld.com/caring_for_sma.php

And last, as always, a speech therapist, physiotherapist or GP is (or should be) able to provide more crucial information and recommendations, and it is always best to consult a specialist before adopting these kinds of regimes.