HE WILL CARRY ME: WITH MY SPECIAL NEEDS

I am very aware of special needs that exist around me. I prefer to give credit to the HOLY SPIRIT of GOD however He has gifted me in this regard. Anyway, one of my favorite JESUS miracle stories is found in Mark 2:1-12:

"And when He had come back to Capernaum several days afterward, it was heard that He was at home. 2 And many were gathered together, so that there was no longer room, even near the door; and He was speaking the word to them. 3 And they came, bringing to Him a paralytic, carried by four men. 4 And being unable to get to Him because of the crowd, they removed the roof above Him; and when they had dug an opening, they let down the pallet on which the paralytic was lying. 5 And Jesus seeing their faith said to the paralytic, "My son, your sins are forgiven." 6 But there were some of the scribes sitting there and reasoning in their hearts, 7 "Why does this man speak that way? He is blaspheming; who can forgive sins but God alone?" 8 And immediately Jesus, aware in His spirit that they were reasoning that way within themselves, said to them, "Why are you reasoning about these things in your hearts? 9 "Which is easier, to say to the paralytic, 'Your sins are forgiven'; or to say, 'Arise, and take up your pallet and walk'?10 "But in order that you may know that the Son of Man has authority on earth to forgive sins" — He said to the paralytic — 11 "I say to you, rise, take up your pallet and go home." 12 And he rose and immediately took up the pallet and went out in the sight of all; so that they were all amazed and were glorifying God, saying, "We have never seen anything like this."

Wow! Four persistent friends, full of faith in Jesus, watched their paralytic friend be healed by JESUS because of their actions. Can you and three friends get together, pray for, and serve someone with special needs and their family? How about you and another mom and your children? How about just your family? What a blessing it would be for you!

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Our Pitman church is full of people and families with special needs. We had a FAITHFUL FRIENDS class back in the winter and were challenged to be more aware of how to minister in this area. Today, I am very thankful for my many friends and family who have special needs. Specifically, today, I am thankful for Marlene and Evan. Although I do not have a picture of "transformed mom" Marlene, you see one of Evan at the top of this post.
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Evan is in surgery this morning at the Children's Hospital. He has been there alot lately. Evan is an energetic and smart little boy who has P.K.U. In addition to this, the family had a big house fire last Christmas and although no one was hurt, they are still recovering. As you read below about P.K.U., I ask you to pray for Evan and his parents, Bruce and Marlene. I ask a special prayer for Marlene's strength as she is Evan's primary caregiver. It can be overwhelming. You can see why, in part, here:
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5 things you should know about Phenylketonuria,

1. Very rare (1 in 10,000 births). PKU (Phenylketonuria) is a rare, inherited metabolic disease that results in mental retardation and other neurological problems when treatment is not started within the first few weeks of life. The disease is caused by the absence of a single enzyme that converts the essential amino acid, phenylalanine (PHE), to another amino acid, tyrosine. All very high protein foods and some fruit and vegetables contain PHE. Children with Phenylketonuria (PKU) once were destined to become mentally retarded and spend their lives in institutions. When treatment is begun early and well-maintained, affected children can now expect normal development in relation to their peers and a normal life span.

2. No cure. Current treatment is a very restricted and expensive diet that consists of limited amount fruits and vegetables that must be carefully weighed and counted towards a daily PHE quota set by a nutrionist and based on weekly blood test results. Patients with PKU cannot eat many foods we take for granted, for example

Pizza, Bread, Waffles, Pancakes
Cheese, Ice cream, Yogurt, Milk shakes, Butter
Chips, Cookies, Donuts Cupcakes and Cake
Breakfast Cereal
Marshmallows
Chocolate, most candy is restricted
Nuts
And many more..

3. A synthetic formula is used as a nutritional substitute for the eliminated foods. It costs $10,000 per year and is not covered by most insurance.

4. Replacement Lo-Protein foods are necessary for satisfying hunger (it is sometimes necessary to tell a child they cannot consume any more food no matter what kind, even if they are still hungry) and to allow the patient to participate in eating food that “looks like” everyone else’s.

A 500 gram package of Lo Protein Pasta costs $8.99.
Pizza shells cost $18.99 for a package of 4 (think personal size Boboli).
Imitation shredded cheese costs $9.89 for 2lb.
32 slices of “cheese” costs $10.99.
A loaf of sliced bread costs10.99.
This is with out the cost of shipping and handling. It is not easy to store or prepare and doesn’t travel well either.

5. Little money spent by major drug companies for research and development of drug treatments for such rare disorders because they will not make the money back in sales. This is why it is so important for PKU families to raise awareness and funds to develop better treatments for the disorder. Our grass roots, family based efforts have already funded the first FDA approved drug that can help in some cases by enhancing enzyme activity and lowering blood PHE levels, however it is not covered by insurance and the current cost is over $30,000 per year.

What you should know about Evan, he has the most severe form of PKU, he has already suffered a leg fracture related to his restricted diet, he is not covered by health insurance for his formula, medical food or doctors visits. Although his diet is vigilantly adhered to, his development has been slightly delayed. Evan attends a preschool for children with disabilities. He is very active but has low endurance due to the lack of protein in his diet. Evan takes longer to rebound from exertion or illness. And Evan has extra challenges unrelated to PKU such as being on the Autistic Spectrum. With all this Evan is a happy little guy who enjoys school and his classmates, hiking with his Dad and helping his Mommy do chores.

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GOD, thank you today for giving us perspective about our lives through the lives of others who have great special needs. Thank you for Evan and his family's perseverance under great trial.

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