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Gift Planning

Newborn Worry Now All but Forgotten

Cameron Johnson was born with a rare condition in the medical world, but it was one that didn't last long, thanks to Children's Mercy.

Cameron Johnson was born with a rare condition in the medical world, but it was one that didn't last long, thanks to Children's Mercy.

It's a rare condition in the medical world – and, fortunately, it's one Cameron Johnson will only remember through his first baby photos.

Cameron Johnson was only 1 week old when doctors pinpointed the cause of his malformed skull – a rare condition known as craniosynostosis. But even before then, his parents knew they had cause to worry.

He was born at a local hospital near his parents' hometown of Middletown, Mo. As Amanda Spegal, Cameron's mother, joyfully held her newborn baby boy for the first time, she noticed something odd about the shape of his forehead. But since babies are commonly born with misshaped skulls as a result of the delivery process, Amanda tried to hide her concerns.

The Culprit
After bringing Cameron home from the hospital, Amanda could no longer keep her worries at bay. Instead of Cameron's skull returning to normal, it seemed to protrude even more. After an emergency consultation with Cameron's pediatrician, she learned the likely cause – a rare form of craniosynostosis known as metopic synostosis. The condition causes two of the skull's growth plates to fuse together too soon, and as a result, the rapidly developing brain forces the head into an unnatural shape.

Once they knew the cause, it was time to find treatment.

Getting the Best Care
After gathering all the knowledge she could about the condition and available treatment options, Amanda was reassured that Children's Mercy had what her son needed – a cure.

She met with Usiakimi Igbaseimokumo, M.D., a Children's Mercy neurosurgeon and the only physician in the region who could treat Cameron's condition. The initial diagnosis was confirmed, and after weighing treatment options, Amanda decided to have Cameron return in two weeks for a minimally invasive procedure – at which time he would be just 3 weeks old.

"I was really nervous. Here I am holding my baby, and soon I'm going to hand him over for surgery. I was an emotional wreck," Amanda says. "But I was surrounded by amazing people who constantly reassured me. We knew everything would be OK."

Good as New
Cameron's surgery was a success by every measure. And after an overnight stay, they were on their way home, where Cameron continued to recover – and quickly showed signs of improvement.

Cameron adapted to the molding helmet almost instantly. He wore the helmet 23 hours a day for the next 11 months – the standard length of time – to ensure his skull would develop fully and naturally. Then on his first birthday, the helmet was removed for good.

"It's fun to see him now and know he looks awesome," Amanda says. "You can't tell there was ever an issue."

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A charitable bequest is one or two sentences in your will or living trust that leave to Children's Mercy a specific item, an amount of money, a gift contingent upon certain events or a percentage of your estate.

an individual or organization designated to receive benefits or funds under a will or other contract, such as an insurance policy, trust or retirement plan

"I give to Children's Mercy, a nonprofit corporation currently located at Kansas City, MO, or its successor thereto, ______________* [written amount or percentage of the estate or description of property] for its unrestricted use and purpose."

able to be changed or cancelled

A revocable living trust is set up during your lifetime and can be revoked at any time before death. They allow assets held in the trust to pass directly to beneficiaries without probate court proceedings and can also reduce federal estate taxes.

cannot be changed or cancelled

tax on gifts generally paid by the person making the gift rather than the recipient

the original value of an asset, such as stock, before its appreciation or depreciation

the growth in value of an asset like stock or real estate since the original purchase

the price a willing buyer and willing seller can agree on

The person receiving the gift annuity payments.

the part of an estate left after debts, taxes and specific bequests have been paid

a written and properly witnessed legal change to a will

the person named in a will to manage the estate, collect the property, pay any debt, and distribute property according to the will

A donor advised fund is an account that you set up but which is managed by a nonprofit organization. You contribute to the account, which grows tax-free. You can recommend how much (and how often) you want to distribute money from that fund to Children's Mercy or other charities. You cannot direct the gifts.

An endowed gift can create a new endowment or add to an existing endowment. The principal of the endowment is invested and a portion of the principal’s earnings are used each year to support our mission.

Tax on the growth in value of an asset—such as real estate or stock—since its original purchase.

Securities, real estate or any other property having a fair market value greater than its original purchase price.

Real estate can be a personal residence, vacation home, timeshare property, farm, commercial property or undeveloped land.

A charitable remainder trust provides you or other named individuals income each year for life or a period not exceeding 20 years from assets you give to the trust you create.

You give assets to a trust that pays our organization set payments for a number of years, which you choose. The longer the length of time, the better the potential tax savings to you. When the term is up, the remaining trust assets go to you, your family or other beneficiaries you select. This is an excellent way to transfer property to family members at a minimal cost.

You fund this type of trust with cash or appreciated assets—and may qualify for a federal income tax charitable deduction when you itemize. You can also make additional gifts; each one also qualifies for a tax deduction. The trust pays you, each year, a variable amount based on a fixed percentage of the fair market value of the trust assets. When the trust terminates, the remaining principal goes to Children's Mercy as a lump sum.

You fund this trust with cash or appreciated assets—and may qualify for a federal income tax charitable deduction when you itemize. Each year the trust pays you or another named individual the same dollar amount you choose at the start. When the trust terminates, the remaining principal goes to Children's Mercy as a lump sum.

A beneficiary designation clearly identifies how specific assets will be distributed after your death.

A charitable gift annuity involves a simple contract between you and Children's Mercy where you agree to make a gift to Children's Mercy and we, in return, agree to pay you (and someone else, if you choose) a fixed amount each year for the rest of your life.

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